Materiały źródłowe

• #1 Overview of the management of epidermolysis bullosa – UpToDate

  https://www.uptodate.com/contents/overview-of-the-management-of-epidermolysis-bullosa/print

  Epidermolysis bullosa (EB) is a heterogeneous group of hereditary mechanobullous diseases characterized by varying degrees of skin and mucosa fragility caused by mutations that affect skin structural proteins. […] The management of patients with EB is largely supportive and includes wound care and prevention and treatment of complications. […] Treatment is largely supportive and includes wound care, control of infection, nutritional support, and prevention and treatment of complications. […] This multidisciplinary approach is emphasized by published consensus recommendations for the management of inherited EB.

• #2 Epidermolysis Bullosa: Symptoms, Causes, Types & Treatment

  https://my.clevelandclinic.org/health/diseases/17792-epidermolysis-bullosa

  Because its genetic, you cant prevent EB. People with a family history of EB who are thinking about becoming parents may benefit from genetic counseling to decide how to grow their families. […] In addition, experts dont currently know what causes EB acquisita. Therefore, healthcare providers dont know how to prevent it. […] Preventive measures extensive every-other-day wrapping of the skin with nonadhesive, protective dressings and regular bathing and wound care can help manage EBs impact.

• #3 Overview of the management of epidermolysis bullosa – UpToDate

  https://www.uptodate.com/contents/overview-of-the-management-of-epidermolysis-bullosa/print

  Epidermolysis bullosa (EB) is a heterogeneous group of hereditary mechanobullous diseases characterized by varying degrees of skin and mucosa fragility caused by mutations that affect skin structural proteins. […] The management of patients with EB is largely supportive and includes wound care and prevention and treatment of complications. […] Treatment is largely supportive and includes wound care, control of infection, nutritional support, and prevention and treatment of complications. […] This multidisciplinary approach is emphasized by published consensus recommendations for the management of inherited EB.

• #4 Epidermolysis Bullosa: Symptoms, Causes, Types & Treatment

  https://my.clevelandclinic.org/health/diseases/17792-epidermolysis-bullosa

  Because its genetic, you cant prevent EB. People with a family history of EB who are thinking about becoming parents may benefit from genetic counseling to decide how to grow their families. […] In addition, experts dont currently know what causes EB acquisita. Therefore, healthcare providers dont know how to prevent it. […] Preventive measures extensive every-other-day wrapping of the skin with nonadhesive, protective dressings and regular bathing and wound care can help manage EBs impact.

• #5 Epidermolysis bullosa Information | Mount Sinai – New York

  https://www.mountsinai.org/health-library/diseases-conditions/epidermolysis-bullosa

  Genetic counseling is recommended for prospective parents who have a family history of any form of epidermolysis bullosa. […] During pregnancy, a test called chorionic villus sampling may be used to test the baby. For couples at high risk of having a child with EB, the test can be done as early as week 8 to 10 of pregnancy. Talk to your provider. […] To prevent skin damage and blistering, wear padding around injury-prone areas such as the elbows, knees, ankles, and buttocks. Avoid contact sports. […] If you have EB acquisita and are on steroids for longer than 1 month, you may need calcium and vitamin D supplements. These supplements may help prevent osteoporosis (thinning bones).

• #6 Epidermolysis Bullosa (EB): Definition, Causes, Symptoms, Treatments

  https://www.apollo247.com/blog/article/epidermolysis-bullosa-causes-symptoms-treatment-prevention

  Preventing EB starts with understanding the genetic aspects of the disease. Here are some prevention methods that can be pursued: […] Consulting with a genetic counsellor can help families understand the risk of passing on EB to their children. They can provide information about inheritance patterns, recurrence risk, and options for family planning. […] For families at risk of having a child with EB disease, prenatal testing can be done to detect the presence of specific gene mutations associated with the disease. Testing options include chorionic villus sampling (CVS) and amniocentesis, which can identify EB during pregnancy. […] Early detection of EB is crucial for managing the condition effectively. Regular check-ups with a dermatologist or an EB specialist can help identify symptoms early on and initiate appropriate treatment plans.

• #7 Epidermolysis Bullosa (EB): Definition, Causes, Symptoms, Treatments

  https://www.apollo247.com/blog/article/epidermolysis-bullosa-causes-symptoms-treatment-prevention

  Preventing EB starts with understanding the genetic aspects of the disease. Here are some prevention methods that can be pursued: […] Consulting with a genetic counsellor can help families understand the risk of passing on EB to their children. They can provide information about inheritance patterns, recurrence risk, and options for family planning. […] For families at risk of having a child with EB disease, prenatal testing can be done to detect the presence of specific gene mutations associated with the disease. Testing options include chorionic villus sampling (CVS) and amniocentesis, which can identify EB during pregnancy. […] Early detection of EB is crucial for managing the condition effectively. Regular check-ups with a dermatologist or an EB specialist can help identify symptoms early on and initiate appropriate treatment plans.

• #8 Epidermolysis bullosa Information | Mount Sinai – New York

  https://www.mountsinai.org/health-library/diseases-conditions/epidermolysis-bullosa

  Genetic counseling is recommended for prospective parents who have a family history of any form of epidermolysis bullosa. […] During pregnancy, a test called chorionic villus sampling may be used to test the baby. For couples at high risk of having a child with EB, the test can be done as early as week 8 to 10 of pregnancy. Talk to your provider. […] To prevent skin damage and blistering, wear padding around injury-prone areas such as the elbows, knees, ankles, and buttocks. Avoid contact sports. […] If you have EB acquisita and are on steroids for longer than 1 month, you may need calcium and vitamin D supplements. These supplements may help prevent osteoporosis (thinning bones).

• #9 Epidermolysis bullosa Information | Mount Sinai – New York

  https://www.mountsinai.org/health-library/diseases-conditions/epidermolysis-bullosa

  Genetic counseling is recommended for prospective parents who have a family history of any form of epidermolysis bullosa. […] During pregnancy, a test called chorionic villus sampling may be used to test the baby. For couples at high risk of having a child with EB, the test can be done as early as week 8 to 10 of pregnancy. Talk to your provider. […] To prevent skin damage and blistering, wear padding around injury-prone areas such as the elbows, knees, ankles, and buttocks. Avoid contact sports. […] If you have EB acquisita and are on steroids for longer than 1 month, you may need calcium and vitamin D supplements. These supplements may help prevent osteoporosis (thinning bones).

• #10 Epidermolysis Bullosa | Doctor

  https://patient.info/doctor/epidermolysis-bullosa-pro

  Patients with possible EB should be referred to a dermatologist. In England, there are four specialist centres: Birmingham Children’s Hospital, Solihull Hospital, Great Ormond Street Children’s Hospital, London, and St Thomas’ Hospital, London. […] There is no cure for EB. Treatment is symptomatic and the primary aim is to protect the skin and stop blister formation, promote healing and prevent complications. […] Therefore, essential aspects of management of EB include: […] Prevention of trauma to the skin reduces blistering. […] Attention must be paid to facilitating wound healing. Wound care is important. Do not let crusts and fluids build up, as they facilitate infection. Topical antibiotics may be required. Avoid adhesive tape. […] Good dental hygiene and regular dental checks are recommended. Many patients with JEB and DEB develop dental caries because of enamel defects. Oral mucosal involvement can accompany severe forms of JEB and DEB. Avoid harsh mouthwashes containing alcohol. Normal saline rinses can help to clean the mucosal surfaces. […] Because of the extensive skin damage, a diet high in calories, protein and vitamins is required. Malnutrition is especially liable in the dystrophic types. A soft diet helps to reduce oral and oesophageal erosions.

• #11 Epidermolysis bullosa

  https://dermnetnz.org/topics/epidermolysis-bullosa

  EB should be distinguished from common friction blisters, and from epidermolysis bullosa acquisita (EBA), which is a blistering autoimmune disease that is not inherited and often doesn’t develop until adult life. […] The primary aim is to protect the skin and stop blister formation, promote healing, and prevent complications. […] Avoid activities that induce friction on the skin. This includes the handling of infants and children alternative handling techniques are easily learnt from a trained health care professional. […] Maintain a cool environment and avoid overheating. […] Use foam padding or sheepskins to help reduce friction on pieces of furniture such as beds, chairs and infant car seats. […] Choose clothing (including nappies) and footwear that is light, has no irritating seams or detail, (eg, zips and tight elastic).

• #12 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  It’s not possible to prevent epidermolysis bullosa. But these steps may help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up a child with epidermolysis bullosa, place the child on soft material and give support under the buttocks and behind the neck. Don’t lift the child from under the arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Try to keep your home cool and the temperature steady. […] Keep the skin moist. Gently apply moisturizer as needed throughout the day. […] Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put on clothing seam-side out to reduce scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible.

• #13 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  It’s not possible to prevent epidermolysis bullosa. But these steps may help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up a child with epidermolysis bullosa, place the child on soft material and give support under the buttocks and behind the neck. Don’t lift the child from under the arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Try to keep your home cool and the temperature steady. […] Keep the skin moist. Gently apply moisturizer as needed throughout the day. […] Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put on clothing seam-side out to reduce scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible.

• #14 Care for Newborns with EB | debra of America

  https://www.debra.org/how/care-newborns-eb

  At present, there is no specific treatment for EB. Current therapy is directed toward the prevention of skin trauma, prevention of infection, and the treatment of complications. […] Avoid lifting babies or children with Epidermolysis Bullosa (EB) from under the arms; instead, place one hand beneath the bottom and another beneath the head/neck to lift. […] Since blisters can be caused by friction, the skin should be patted rather than rubbed. […] Clothing that rubs the skin may cause blisters. Avoid or alter clothing with binding elastic. […] Overheating tends to increase skin fragility. Maintain a moderate environmental temperature (including your car) and do not over-dress. […] Tape or band-aids should not be applied to the skin because they may cause blistering. […] Hand washing is the most effective measure to control infection.

• #15 Care for Newborns with EB | debra of America

  https://www.debra.org/how/care-newborns-eb

  At present, there is no specific treatment for EB. Current therapy is directed toward the prevention of skin trauma, prevention of infection, and the treatment of complications. […] Avoid lifting babies or children with Epidermolysis Bullosa (EB) from under the arms; instead, place one hand beneath the bottom and another beneath the head/neck to lift. […] Since blisters can be caused by friction, the skin should be patted rather than rubbed. […] Clothing that rubs the skin may cause blisters. Avoid or alter clothing with binding elastic. […] Overheating tends to increase skin fragility. Maintain a moderate environmental temperature (including your car) and do not over-dress. […] Tape or band-aids should not be applied to the skin because they may cause blistering. […] Hand washing is the most effective measure to control infection.

• #16 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  It’s not possible to prevent epidermolysis bullosa. But these steps may help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up a child with epidermolysis bullosa, place the child on soft material and give support under the buttocks and behind the neck. Don’t lift the child from under the arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Try to keep your home cool and the temperature steady. […] Keep the skin moist. Gently apply moisturizer as needed throughout the day. […] Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put on clothing seam-side out to reduce scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible.

• #17 Epidermolysis bullosa

  https://www.mymlc.com/health-information/diseases-and-conditions/e/epidermolysis-bullosa2/?section=Treatment

  It’s not possible to prevent epidermolysis bullosa. But you can take steps to help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up your child, place him or her on soft material, such as cotton, and support under the buttocks and behind the neck. Don’t lift your child from under his or her arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Set your thermostat so that your home remains cool and the temperature remains steady. […] Keep the skin moist. Gently apply lubricants, such as petroleum jelly.

• #18 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  It’s not possible to prevent epidermolysis bullosa. But these steps may help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up a child with epidermolysis bullosa, place the child on soft material and give support under the buttocks and behind the neck. Don’t lift the child from under the arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Try to keep your home cool and the temperature steady. […] Keep the skin moist. Gently apply moisturizer as needed throughout the day. […] Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put on clothing seam-side out to reduce scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible.

• #19 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  It’s not possible to prevent epidermolysis bullosa. But these steps may help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up a child with epidermolysis bullosa, place the child on soft material and give support under the buttocks and behind the neck. Don’t lift the child from under the arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Try to keep your home cool and the temperature steady. […] Keep the skin moist. Gently apply moisturizer as needed throughout the day. […] Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put on clothing seam-side out to reduce scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible.

• #20 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  It’s not possible to prevent epidermolysis bullosa. But these steps may help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up a child with epidermolysis bullosa, place the child on soft material and give support under the buttocks and behind the neck. Don’t lift the child from under the arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Try to keep your home cool and the temperature steady. […] Keep the skin moist. Gently apply moisturizer as needed throughout the day. […] Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put on clothing seam-side out to reduce scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible.

• #21 Care for Newborns with EB | debra of America

  https://www.debra.org/how/care-newborns-eb

  At present, there is no specific treatment for EB. Current therapy is directed toward the prevention of skin trauma, prevention of infection, and the treatment of complications. […] Avoid lifting babies or children with Epidermolysis Bullosa (EB) from under the arms; instead, place one hand beneath the bottom and another beneath the head/neck to lift. […] Since blisters can be caused by friction, the skin should be patted rather than rubbed. […] Clothing that rubs the skin may cause blisters. Avoid or alter clothing with binding elastic. […] Overheating tends to increase skin fragility. Maintain a moderate environmental temperature (including your car) and do not over-dress. […] Tape or band-aids should not be applied to the skin because they may cause blistering. […] Hand washing is the most effective measure to control infection.

• #22 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  It’s not possible to prevent epidermolysis bullosa. But these steps may help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up a child with epidermolysis bullosa, place the child on soft material and give support under the buttocks and behind the neck. Don’t lift the child from under the arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Try to keep your home cool and the temperature steady. […] Keep the skin moist. Gently apply moisturizer as needed throughout the day. […] Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put on clothing seam-side out to reduce scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible.

• #23

  https://pmc.ncbi.nlm.nih.gov/articles/PMC7065089/

  Selection of appropriate footwear and the use of appropriate insoles can help to reduce blisters and improve foot function in patients with EB. […] Footwear for patients with EB should ideally be firm and comfortably fitting, with appropriate length and width, a rounded toe and a flexible flat sole with heel support. […] We recommend suitable footwear and appropriate insoles or orthotics for management of the EB foot by podiatrists, patients, carers and healthcare professionals. […] The overriding recommendation is to minimize mechanical trauma to the feet by emphasizing the need for suitable footwear and appropriate insoles or orthotics. […] The overarching recommendations here are as follows: Referral for podiatry assessment, treatment and monitoring to minimize blisters and pain while walking. […] All patients with EB require nail management from birth, plus wound care and footwear advice and insoles as they become older.

• #24

  https://pmc.ncbi.nlm.nih.gov/articles/PMC7065089/

  Selection of appropriate footwear and the use of appropriate insoles can help to reduce blisters and improve foot function in patients with EB. […] Footwear for patients with EB should ideally be firm and comfortably fitting, with appropriate length and width, a rounded toe and a flexible flat sole with heel support. […] We recommend suitable footwear and appropriate insoles or orthotics for management of the EB foot by podiatrists, patients, carers and healthcare professionals. […] The overriding recommendation is to minimize mechanical trauma to the feet by emphasizing the need for suitable footwear and appropriate insoles or orthotics. […] The overarching recommendations here are as follows: Referral for podiatry assessment, treatment and monitoring to minimize blisters and pain while walking. […] All patients with EB require nail management from birth, plus wound care and footwear advice and insoles as they become older.

• #25 Epidermolysis bullosa

  https://www.mymlc.com/health-information/diseases-and-conditions/e/epidermolysis-bullosa2/?section=Treatment

  Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put clothing on seam-side out to minimize scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible. […] Prevent scratching. Trim your child’s fingernails regularly. Consider putting mittens on him or her at bedtime to help prevent scratching and infection. […] Encourage your child to be active. As your child grows, encourage him or her to be involved in activities that don’t cause skin injury. Swimming is a good option. For children with mild forms of epidermolysis bullosa, they can protect their skin by wearing long pants and sleeves for outdoor activities. […] Cover hard surfaces. For example, place sheepskin on car seats and line the bathing tub with a thick towel.

• #26 Epidermolysis bullosa

  https://dermnetnz.org/topics/epidermolysis-bullosa

  EB should be distinguished from common friction blisters, and from epidermolysis bullosa acquisita (EBA), which is a blistering autoimmune disease that is not inherited and often doesn’t develop until adult life. […] The primary aim is to protect the skin and stop blister formation, promote healing, and prevent complications. […] Avoid activities that induce friction on the skin. This includes the handling of infants and children alternative handling techniques are easily learnt from a trained health care professional. […] Maintain a cool environment and avoid overheating. […] Use foam padding or sheepskins to help reduce friction on pieces of furniture such as beds, chairs and infant car seats. […] Choose clothing (including nappies) and footwear that is light, has no irritating seams or detail, (eg, zips and tight elastic).

• #27 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  It’s not possible to prevent epidermolysis bullosa. But these steps may help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up a child with epidermolysis bullosa, place the child on soft material and give support under the buttocks and behind the neck. Don’t lift the child from under the arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Try to keep your home cool and the temperature steady. […] Keep the skin moist. Gently apply moisturizer as needed throughout the day. […] Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put on clothing seam-side out to reduce scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible.

• #28 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  It’s not possible to prevent epidermolysis bullosa. But these steps may help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up a child with epidermolysis bullosa, place the child on soft material and give support under the buttocks and behind the neck. Don’t lift the child from under the arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Try to keep your home cool and the temperature steady. […] Keep the skin moist. Gently apply moisturizer as needed throughout the day. […] Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put on clothing seam-side out to reduce scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible.

• #29 Epidermolysis bullosa: Tips dermatologists give parents

  https://www.aad.org/public/diseases/a-z/epidermolysis-bullosa-self-care

  Try to reduce blisters from diapers and clothes with these tips: Use disposable diapers with Velcro fasteners instead of tapes, which could stick to the child’s skin. […] Prevent medical gloves from injuring your child’s skin. The latex or vinyl may rub your child’s skin, which can cause blisters. To help prevent this, dermatologists recommend: If you can, try to stop wearing gloves during wound care: Instead of wearing gloves, wash your hands frequently while caring for your child’s skin. […] Report complications as soon as they arise. Blisters can develop just about anywhere, and sometimes scars appear when the skin heals. Both can lead to unexpected complications. With early intervention, many complications can be lessened or prevented. […] Encourage play and movement. It’s understandably hard to encourage your child to play and move about when the skin is so fragile, but children with EB should move as much as they can. It is better for a child to get a blister now and again than to be too afraid to move.

• #30 Epidermolysis bullosa

  https://www.mymlc.com/health-information/diseases-and-conditions/e/epidermolysis-bullosa2/?section=Treatment

  It’s not possible to prevent epidermolysis bullosa. But you can take steps to help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up your child, place him or her on soft material, such as cotton, and support under the buttocks and behind the neck. Don’t lift your child from under his or her arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Set your thermostat so that your home remains cool and the temperature remains steady. […] Keep the skin moist. Gently apply lubricants, such as petroleum jelly.

• #31 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  It’s not possible to prevent epidermolysis bullosa. But these steps may help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up a child with epidermolysis bullosa, place the child on soft material and give support under the buttocks and behind the neck. Don’t lift the child from under the arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Try to keep your home cool and the temperature steady. […] Keep the skin moist. Gently apply moisturizer as needed throughout the day. […] Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put on clothing seam-side out to reduce scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible.

• #32 Epidermolysis bullosa

  https://www.mymlc.com/health-information/diseases-and-conditions/e/epidermolysis-bullosa2/?section=Treatment

  It’s not possible to prevent epidermolysis bullosa. But you can take steps to help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up your child, place him or her on soft material, such as cotton, and support under the buttocks and behind the neck. Don’t lift your child from under his or her arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Set your thermostat so that your home remains cool and the temperature remains steady. […] Keep the skin moist. Gently apply lubricants, such as petroleum jelly.

• #33 Care for Newborns with EB | debra of America

  https://www.debra.org/how/care-newborns-eb

  At present, there is no specific treatment for EB. Current therapy is directed toward the prevention of skin trauma, prevention of infection, and the treatment of complications. […] Avoid lifting babies or children with Epidermolysis Bullosa (EB) from under the arms; instead, place one hand beneath the bottom and another beneath the head/neck to lift. […] Since blisters can be caused by friction, the skin should be patted rather than rubbed. […] Clothing that rubs the skin may cause blisters. Avoid or alter clothing with binding elastic. […] Overheating tends to increase skin fragility. Maintain a moderate environmental temperature (including your car) and do not over-dress. […] Tape or band-aids should not be applied to the skin because they may cause blistering. […] Hand washing is the most effective measure to control infection.

• #34 Epidermolysis bullosa

  https://dermnetnz.org/topics/epidermolysis-bullosa

  EB should be distinguished from common friction blisters, and from epidermolysis bullosa acquisita (EBA), which is a blistering autoimmune disease that is not inherited and often doesn’t develop until adult life. […] The primary aim is to protect the skin and stop blister formation, promote healing, and prevent complications. […] Avoid activities that induce friction on the skin. This includes the handling of infants and children alternative handling techniques are easily learnt from a trained health care professional. […] Maintain a cool environment and avoid overheating. […] Use foam padding or sheepskins to help reduce friction on pieces of furniture such as beds, chairs and infant car seats. […] Choose clothing (including nappies) and footwear that is light, has no irritating seams or detail, (eg, zips and tight elastic).

• #35 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  It’s not possible to prevent epidermolysis bullosa. But these steps may help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up a child with epidermolysis bullosa, place the child on soft material and give support under the buttocks and behind the neck. Don’t lift the child from under the arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Try to keep your home cool and the temperature steady. […] Keep the skin moist. Gently apply moisturizer as needed throughout the day. […] Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put on clothing seam-side out to reduce scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible.

• #36 Epidermolysis bullosa

  https://www.mymlc.com/health-information/diseases-and-conditions/e/epidermolysis-bullosa2/?section=Treatment

  It’s not possible to prevent epidermolysis bullosa. But you can take steps to help prevent blisters and infection. […] Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up your child, place him or her on soft material, such as cotton, and support under the buttocks and behind the neck. Don’t lift your child from under his or her arms. […] Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. […] Keep the home environment cool. Set your thermostat so that your home remains cool and the temperature remains steady. […] Keep the skin moist. Gently apply lubricants, such as petroleum jelly.

• #37 Epidermolysis Bullosa: Symptoms, Causes, Diagnosis, Treatment

  https://www.webmd.com/skin-problems-and-treatments/epidermolysis-bullosa-what-is

  To help prevent blisters, you have to take special care of your skin. […] Reduce friction. Use lotion to keep your skin moist and reduce friction. If you cover wounds, use only dressings that arent sticky, then loosely wrap again with rolled gauze. Wear loose-fitting clothes without tags, tight sleeves, or seams. […] Know the signs of infection. Your skin may get red or feel hot to the touch if it is becoming infected. You could also notice pus or a yellow discharge crusting at the site, a red streak under the skin, or have fever or chills. If you see any of these signs, call your doctor right away. You may need antibiotics. […] Check your diet. Many people with epidermolysis bullosa have low levels of iron, selenium, or vitamin D. Your doctor may suggest that you see a nutritionist about eating more foods that are rich in these vitamins and minerals.

• #38 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  Prevent scratching. Trim your child’s fingernails regularly. […] Encourage your child to be active. As your child grows, encourage activities that reduce the risk of skin injury. Swimming is a good option. For children with mild forms of epidermolysis bullosa, they can protect the skin by wearing long pants and sleeves for outdoor activities. […] Cover hard surfaces. Consider padding a car seat or bathing tub with sheepskin, foam or a thick towel. Soft cotton or silk can be used as a top layer over the padding.

• #39 Epidermolysis bullosa

  https://www.mymlc.com/health-information/diseases-and-conditions/e/epidermolysis-bullosa2/?section=Treatment

  Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put clothing on seam-side out to minimize scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible. […] Prevent scratching. Trim your child’s fingernails regularly. Consider putting mittens on him or her at bedtime to help prevent scratching and infection. […] Encourage your child to be active. As your child grows, encourage him or her to be involved in activities that don’t cause skin injury. Swimming is a good option. For children with mild forms of epidermolysis bullosa, they can protect their skin by wearing long pants and sleeves for outdoor activities. […] Cover hard surfaces. For example, place sheepskin on car seats and line the bathing tub with a thick towel.

• #40 Recommended Strategies for Epidermolysis Bullosa Management in Romania

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3865131/

  The patient should avoid trauma and blister expansion by using foam dressings and soft sleeping and seating surfaces. Preventing local infestation by draining the blisters, using dressings and control local colonization might prove in itself a major challenge. […] Treatment for EB must be patient orientated. Individual tailoring begins with preventive measures, nutritional support and ends with wound care indications. The assessment of skin lesions and general condition of the patient are important tools not only for monitoring the patient but also for the periodic up-date of the recommended strategy. […] The correct use of dressings is of paramount importance and should be according to the wound characteristics; there are different types to be use: occlusive, semiocclusive, absorptive, hydrating, hemostatic etc. […] The patient should avoid trauma and blister expansion by using foam dressings and soft sleeping and seating surfaces. Preventing local infestation by draining the blisters, using dressings and control local colonization might prove in itself a major challenge.

• #41 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  Prevent scratching. Trim your child’s fingernails regularly. […] Encourage your child to be active. As your child grows, encourage activities that reduce the risk of skin injury. Swimming is a good option. For children with mild forms of epidermolysis bullosa, they can protect the skin by wearing long pants and sleeves for outdoor activities. […] Cover hard surfaces. Consider padding a car seat or bathing tub with sheepskin, foam or a thick towel. Soft cotton or silk can be used as a top layer over the padding.

• #42 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  Prevent scratching. Trim your child’s fingernails regularly. […] Encourage your child to be active. As your child grows, encourage activities that reduce the risk of skin injury. Swimming is a good option. For children with mild forms of epidermolysis bullosa, they can protect the skin by wearing long pants and sleeves for outdoor activities. […] Cover hard surfaces. Consider padding a car seat or bathing tub with sheepskin, foam or a thick towel. Soft cotton or silk can be used as a top layer over the padding.

• #43 Epidermolysis bullosa

  https://www.mymlc.com/health-information/diseases-and-conditions/e/epidermolysis-bullosa2/?section=Treatment

  Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put clothing on seam-side out to minimize scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible. […] Prevent scratching. Trim your child’s fingernails regularly. Consider putting mittens on him or her at bedtime to help prevent scratching and infection. […] Encourage your child to be active. As your child grows, encourage him or her to be involved in activities that don’t cause skin injury. Swimming is a good option. For children with mild forms of epidermolysis bullosa, they can protect their skin by wearing long pants and sleeves for outdoor activities. […] Cover hard surfaces. For example, place sheepskin on car seats and line the bathing tub with a thick towel.

• #44 Epidermolysis bullosa

  https://dermnetnz.org/topics/epidermolysis-bullosa

  EB should be distinguished from common friction blisters, and from epidermolysis bullosa acquisita (EBA), which is a blistering autoimmune disease that is not inherited and often doesn’t develop until adult life. […] The primary aim is to protect the skin and stop blister formation, promote healing, and prevent complications. […] Avoid activities that induce friction on the skin. This includes the handling of infants and children alternative handling techniques are easily learnt from a trained health care professional. […] Maintain a cool environment and avoid overheating. […] Use foam padding or sheepskins to help reduce friction on pieces of furniture such as beds, chairs and infant car seats. […] Choose clothing (including nappies) and footwear that is light, has no irritating seams or detail, (eg, zips and tight elastic).

• #45 Epidermolysis bullosa

  https://www.rch.org.au/kidsinfo/fact_sheets/epidermolysis_bullosa/

  EB management aims to: […] prevent blistering as much as possible by reducing friction, and protecting skin from trauma with appropriate footwear and clothing […] treat wounds as soon as possible by bursting blisters and applying appropriate solutions, creams and dressings […] reduce possible infections with topical treatments and regular bleach baths […] treat infections appropriately with topical or oral antibiotics […] maintain good nutrition with a balanced diet […] alleviate pain and discomfort with symptom care and appropriate pain medications. […] Dress your child in soft clothing to avoid rubbing blisters. […] Ensure shoes are fitted correctly as shoes may rub causing wounds to feet. […] Try not to let your child get too hot. […] Use sheepskin or foam padding on surfaces that may cause friction (e.g. chairs, beds, infant car seats).

• #46 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  Prevent scratching. Trim your child’s fingernails regularly. […] Encourage your child to be active. As your child grows, encourage activities that reduce the risk of skin injury. Swimming is a good option. For children with mild forms of epidermolysis bullosa, they can protect the skin by wearing long pants and sleeves for outdoor activities. […] Cover hard surfaces. Consider padding a car seat or bathing tub with sheepskin, foam or a thick towel. Soft cotton or silk can be used as a top layer over the padding.

• #47 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  Prevent scratching. Trim your child’s fingernails regularly. […] Encourage your child to be active. As your child grows, encourage activities that reduce the risk of skin injury. Swimming is a good option. For children with mild forms of epidermolysis bullosa, they can protect the skin by wearing long pants and sleeves for outdoor activities. […] Cover hard surfaces. Consider padding a car seat or bathing tub with sheepskin, foam or a thick towel. Soft cotton or silk can be used as a top layer over the padding.

• #48

  https://www.nhs.uk/conditions/epidermolysis-bullosa/treatment/

  An important part of your child’s treatment plan will be practical advice about how to prevent trauma or friction to your child’s skin to reduce the frequency of blistering. […] This advice may include: not walking long distances (this can cause blisters to form on the soles of your child’s feet), avoiding everyday knocks, bumps and scratches, avoiding rubbing your child’s skin (you may have to change the way you lift your child), keeping your child as cool as possible in warm weather, avoiding clothes that fit tightly or rub against the skin to try to prevent blistering, wearing clothes made from natural fabrics, like cotton (this will also help keep your child cool), choosing comfortable shoes that fit well and don’t have lumpy seams inside. […] Your child may have to have a carer when they’re out in the playground and avoid playing contact sports. […] But it’s important that they don’t avoid physical activities or contact with other children altogether. […] Your physiotherapist should be able to recommend activities unlikely to result in blistering, such as swimming.

• #49 Epidermolysis bullosa | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/epidermolysis-bullosa

  Prevent scratching. Trim your child’s fingernails regularly. […] Encourage your child to be active. As your child grows, encourage activities that reduce the risk of skin injury. Swimming is a good option. For children with mild forms of epidermolysis bullosa, they can protect the skin by wearing long pants and sleeves for outdoor activities. […] Cover hard surfaces. Consider padding a car seat or bathing tub with sheepskin, foam or a thick towel. Soft cotton or silk can be used as a top layer over the padding.

• #50

  https://www.nhs.uk/conditions/epidermolysis-bullosa/treatment/

  An important part of your child’s treatment plan will be practical advice about how to prevent trauma or friction to your child’s skin to reduce the frequency of blistering. […] This advice may include: not walking long distances (this can cause blisters to form on the soles of your child’s feet), avoiding everyday knocks, bumps and scratches, avoiding rubbing your child’s skin (you may have to change the way you lift your child), keeping your child as cool as possible in warm weather, avoiding clothes that fit tightly or rub against the skin to try to prevent blistering, wearing clothes made from natural fabrics, like cotton (this will also help keep your child cool), choosing comfortable shoes that fit well and don’t have lumpy seams inside. […] Your child may have to have a carer when they’re out in the playground and avoid playing contact sports. […] But it’s important that they don’t avoid physical activities or contact with other children altogether. […] Your physiotherapist should be able to recommend activities unlikely to result in blistering, such as swimming.

• #51

  https://www.nhs.uk/conditions/epidermolysis-bullosa/treatment/

  An important part of your child’s treatment plan will be practical advice about how to prevent trauma or friction to your child’s skin to reduce the frequency of blistering. […] This advice may include: not walking long distances (this can cause blisters to form on the soles of your child’s feet), avoiding everyday knocks, bumps and scratches, avoiding rubbing your child’s skin (you may have to change the way you lift your child), keeping your child as cool as possible in warm weather, avoiding clothes that fit tightly or rub against the skin to try to prevent blistering, wearing clothes made from natural fabrics, like cotton (this will also help keep your child cool), choosing comfortable shoes that fit well and don’t have lumpy seams inside. […] Your child may have to have a carer when they’re out in the playground and avoid playing contact sports. […] But it’s important that they don’t avoid physical activities or contact with other children altogether. […] Your physiotherapist should be able to recommend activities unlikely to result in blistering, such as swimming.

• #52

  https://www.nhs.uk/conditions/epidermolysis-bullosa/treatment/

  An important part of your child’s treatment plan will be practical advice about how to prevent trauma or friction to your child’s skin to reduce the frequency of blistering. […] This advice may include: not walking long distances (this can cause blisters to form on the soles of your child’s feet), avoiding everyday knocks, bumps and scratches, avoiding rubbing your child’s skin (you may have to change the way you lift your child), keeping your child as cool as possible in warm weather, avoiding clothes that fit tightly or rub against the skin to try to prevent blistering, wearing clothes made from natural fabrics, like cotton (this will also help keep your child cool), choosing comfortable shoes that fit well and don’t have lumpy seams inside. […] Your child may have to have a carer when they’re out in the playground and avoid playing contact sports. […] But it’s important that they don’t avoid physical activities or contact with other children altogether. […] Your physiotherapist should be able to recommend activities unlikely to result in blistering, such as swimming.

• #53 Epidermolysis bullosa

  https://www.mymlc.com/health-information/diseases-and-conditions/e/epidermolysis-bullosa2/?section=Treatment

  Dress your child in soft clothes. Use soft clothing that’s simple to get on and off. It may help to remove labels and put clothing on seam-side out to minimize scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible. […] Prevent scratching. Trim your child’s fingernails regularly. Consider putting mittens on him or her at bedtime to help prevent scratching and infection. […] Encourage your child to be active. As your child grows, encourage him or her to be involved in activities that don’t cause skin injury. Swimming is a good option. For children with mild forms of epidermolysis bullosa, they can protect their skin by wearing long pants and sleeves for outdoor activities. […] Cover hard surfaces. For example, place sheepskin on car seats and line the bathing tub with a thick towel.

• #54 Epidermolysis bullosa: Tips dermatologists give parents

  https://www.aad.org/public/diseases/a-z/epidermolysis-bullosa-self-care

  Try to reduce blisters from diapers and clothes with these tips: Use disposable diapers with Velcro fasteners instead of tapes, which could stick to the child’s skin. […] Prevent medical gloves from injuring your child’s skin. The latex or vinyl may rub your child’s skin, which can cause blisters. To help prevent this, dermatologists recommend: If you can, try to stop wearing gloves during wound care: Instead of wearing gloves, wash your hands frequently while caring for your child’s skin. […] Report complications as soon as they arise. Blisters can develop just about anywhere, and sometimes scars appear when the skin heals. Both can lead to unexpected complications. With early intervention, many complications can be lessened or prevented. […] Encourage play and movement. It’s understandably hard to encourage your child to play and move about when the skin is so fragile, but children with EB should move as much as they can. It is better for a child to get a blister now and again than to be too afraid to move.

• #55 Epidermolysis bullosa Information | Mount Sinai – New York

  https://www.mountsinai.org/health-library/diseases-conditions/epidermolysis-bullosa

  Genetic counseling is recommended for prospective parents who have a family history of any form of epidermolysis bullosa. […] During pregnancy, a test called chorionic villus sampling may be used to test the baby. For couples at high risk of having a child with EB, the test can be done as early as week 8 to 10 of pregnancy. Talk to your provider. […] To prevent skin damage and blistering, wear padding around injury-prone areas such as the elbows, knees, ankles, and buttocks. Avoid contact sports. […] If you have EB acquisita and are on steroids for longer than 1 month, you may need calcium and vitamin D supplements. These supplements may help prevent osteoporosis (thinning bones).

• #56 Epidermolysis bullosa Information | Mount Sinai – New York

  https://www.mountsinai.org/health-library/diseases-conditions/epidermolysis-bullosa

  Genetic counseling is recommended for prospective parents who have a family history of any form of epidermolysis bullosa. […] During pregnancy, a test called chorionic villus sampling may be used to test the baby. For couples at high risk of having a child with EB, the test can be done as early as week 8 to 10 of pregnancy. Talk to your provider. […] To prevent skin damage and blistering, wear padding around injury-prone areas such as the elbows, knees, ankles, and buttocks. Avoid contact sports. […] If you have EB acquisita and are on steroids for longer than 1 month, you may need calcium and vitamin D supplements. These supplements may help prevent osteoporosis (thinning bones).

• #57 Epidermolysis Bullosa | Children’s Hospital of Philadelphia

  https://www.chop.edu/conditions-diseases/epidermolysis-bullosa

  Preventing blisters: The first line treatment for a child with EB is to minimize sources of friction on the skin that cause blistering. Your childs medical team can advise on ways of holding, clothing, and diapering your child to help prevent blisters. […] Wound care: Even with the best preventive care, some blistering is inevitable. Expert wound care is critical for all patients with the disease. Special dressings and wound-care supplies may be needed, as contact with standard adhesives and dressings can cause friction and additional blistering.

• #58 Epidermolysis Bullosa | Children’s Hospital of Philadelphia

  https://www.chop.edu/conditions-diseases/epidermolysis-bullosa

  Preventing blisters: The first line treatment for a child with EB is to minimize sources of friction on the skin that cause blistering. Your childs medical team can advise on ways of holding, clothing, and diapering your child to help prevent blisters. […] Wound care: Even with the best preventive care, some blistering is inevitable. Expert wound care is critical for all patients with the disease. Special dressings and wound-care supplies may be needed, as contact with standard adhesives and dressings can cause friction and additional blistering.

• #59

  https://pmc.ncbi.nlm.nih.gov/articles/PMC7065089/

  This guideline was designed to provide service providers and users with an evidencebased set of current best practice guidelines for people and their families and carers, living with epidermolysis bullosa (EB). […] A podiatry education programme should be offered from birth, enabling carers, patients and staff to recognize and avoid causes of blistering and wounds, including footwear, dressings, foot biomechanics, heat and sweating. […] The usual technique is to lance intact blisters with a sterile needle at their lowest point to facilitate fluid drainage by gravity and to stop blisters from refilling. […] Generally the management of EB tends to be supportive and is aimed at preventing blistering by reducing friction and the amount of mechanical trauma to the feet. […] Prevention is key and involves minimizing friction and mechanical trauma to the feet.

• #60 Epidermolysis bullosa

  https://www.rch.org.au/kidsinfo/fact_sheets/epidermolysis_bullosa/

  Blisters should be popped with a sterile needle as this will make your child feel more comfortable and will stop the blisters from getting bigger. […] Your child may be eligible to access dressings via the Government-funded National Epidermolysis Bullosa Dressings Scheme (NEBDS). […] There is no specific diet required for a child with EB. […] Adequate intake of fluids and fibre is recommended to help prevent constipation. […] The main treatment for EB is good wound care and nutrition. This assists wound healing and helps to prevent infection.

• #61 Epidermolysis Bullosa: Symptoms, Causes, Diagnosis, Treatment

  https://www.webmd.com/skin-problems-and-treatments/epidermolysis-bullosa-what-is

  To help prevent blisters, you have to take special care of your skin. […] Reduce friction. Use lotion to keep your skin moist and reduce friction. If you cover wounds, use only dressings that arent sticky, then loosely wrap again with rolled gauze. Wear loose-fitting clothes without tags, tight sleeves, or seams. […] Know the signs of infection. Your skin may get red or feel hot to the touch if it is becoming infected. You could also notice pus or a yellow discharge crusting at the site, a red streak under the skin, or have fever or chills. If you see any of these signs, call your doctor right away. You may need antibiotics. […] Check your diet. Many people with epidermolysis bullosa have low levels of iron, selenium, or vitamin D. Your doctor may suggest that you see a nutritionist about eating more foods that are rich in these vitamins and minerals.

• #62 Epidermolysis bullosa

  https://dermnetnz.org/topics/epidermolysis-bullosa

  Pierce, drain and dress blisters to promote healing (this should be done only by people who have received training on wound care). […] Many traditional adhesive tapes and dressings may be unsuitable for people with EB especially those with the more severe forms (eg, RDEB) as their removal can cause additional trauma to the skin. Use of advanced wound care products such as low-adherent silicone tapes and dressings is recommended. […] Oleogel-S10, containing birch triterpenes or birch bark extract, has been shown to accelerate the healing of chronic wounds in junctional and dystrophic epidermolysis bullosa. […] When EB affects other parts of the body, various cares and treatments are adopted. For example, a soft diet when the oesophagus is involved or using stool softeners for constipation, or if the patient has anal blisters. […] Clinical practice guidelines are available on the DEBRA International website including those on Oral Health care, Wound Care, Pain Management, Cancer Management.

• #63 Epidermolysis bullosa

  https://dermnetnz.org/topics/epidermolysis-bullosa

  Pierce, drain and dress blisters to promote healing (this should be done only by people who have received training on wound care). […] Many traditional adhesive tapes and dressings may be unsuitable for people with EB especially those with the more severe forms (eg, RDEB) as their removal can cause additional trauma to the skin. Use of advanced wound care products such as low-adherent silicone tapes and dressings is recommended. […] Oleogel-S10, containing birch triterpenes or birch bark extract, has been shown to accelerate the healing of chronic wounds in junctional and dystrophic epidermolysis bullosa. […] When EB affects other parts of the body, various cares and treatments are adopted. For example, a soft diet when the oesophagus is involved or using stool softeners for constipation, or if the patient has anal blisters. […] Clinical practice guidelines are available on the DEBRA International website including those on Oral Health care, Wound Care, Pain Management, Cancer Management.

• #64 Care for Newborns with EB | debra of America

  https://www.debra.org/how/care-newborns-eb

  At present, there is no specific treatment for EB. Current therapy is directed toward the prevention of skin trauma, prevention of infection, and the treatment of complications. […] Avoid lifting babies or children with Epidermolysis Bullosa (EB) from under the arms; instead, place one hand beneath the bottom and another beneath the head/neck to lift. […] Since blisters can be caused by friction, the skin should be patted rather than rubbed. […] Clothing that rubs the skin may cause blisters. Avoid or alter clothing with binding elastic. […] Overheating tends to increase skin fragility. Maintain a moderate environmental temperature (including your car) and do not over-dress. […] Tape or band-aids should not be applied to the skin because they may cause blistering. […] Hand washing is the most effective measure to control infection.

• #65 Epidermolysis bullosa

  https://dermnetnz.org/topics/epidermolysis-bullosa

  Pierce, drain and dress blisters to promote healing (this should be done only by people who have received training on wound care). […] Many traditional adhesive tapes and dressings may be unsuitable for people with EB especially those with the more severe forms (eg, RDEB) as their removal can cause additional trauma to the skin. Use of advanced wound care products such as low-adherent silicone tapes and dressings is recommended. […] Oleogel-S10, containing birch triterpenes or birch bark extract, has been shown to accelerate the healing of chronic wounds in junctional and dystrophic epidermolysis bullosa. […] When EB affects other parts of the body, various cares and treatments are adopted. For example, a soft diet when the oesophagus is involved or using stool softeners for constipation, or if the patient has anal blisters. […] Clinical practice guidelines are available on the DEBRA International website including those on Oral Health care, Wound Care, Pain Management, Cancer Management.

• #66 Care for Newborns with EB | debra of America

  https://www.debra.org/how/care-newborns-eb

  At present, there is no specific treatment for EB. Current therapy is directed toward the prevention of skin trauma, prevention of infection, and the treatment of complications. […] Avoid lifting babies or children with Epidermolysis Bullosa (EB) from under the arms; instead, place one hand beneath the bottom and another beneath the head/neck to lift. […] Since blisters can be caused by friction, the skin should be patted rather than rubbed. […] Clothing that rubs the skin may cause blisters. Avoid or alter clothing with binding elastic. […] Overheating tends to increase skin fragility. Maintain a moderate environmental temperature (including your car) and do not over-dress. […] Tape or band-aids should not be applied to the skin because they may cause blistering. […] Hand washing is the most effective measure to control infection.

• #67 Care for Newborns with EB | debra of America

  https://www.debra.org/how/care-newborns-eb

  Daily dressing changes are recommended for your newborn with Epidermolysis Bullosa (EB) and can be coordinated with a bath or cleansing of the skin. […] A mild antibiotic ointment may be applied to the area to aid in the prevention of infection. […] Mild, over-the-counter antibiotics (Polysporin, Bacitracin) are effective in preventing infection and may be rotated every month or two to discourage bacterial resistance. […] It is important to chart the growth of an infant/child with EB. Such charts provide essential information for evaluating the adequacy of the diet. […] Some families find benefit from wrapping some high risk areas even when there are no wounds, in order to prevent damage.

• #68 Care for Newborns with EB | debra of America

  https://www.debra.org/how/care-newborns-eb

  Daily dressing changes are recommended for your newborn with Epidermolysis Bullosa (EB) and can be coordinated with a bath or cleansing of the skin. […] A mild antibiotic ointment may be applied to the area to aid in the prevention of infection. […] Mild, over-the-counter antibiotics (Polysporin, Bacitracin) are effective in preventing infection and may be rotated every month or two to discourage bacterial resistance. […] It is important to chart the growth of an infant/child with EB. Such charts provide essential information for evaluating the adequacy of the diet. […] Some families find benefit from wrapping some high risk areas even when there are no wounds, in order to prevent damage.

• #69 Recommended Strategies for Epidermolysis Bullosa Management in Romania

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3865131/

  The patient should avoid trauma and blister expansion by using foam dressings and soft sleeping and seating surfaces. Preventing local infestation by draining the blisters, using dressings and control local colonization might prove in itself a major challenge. […] Treatment for EB must be patient orientated. Individual tailoring begins with preventive measures, nutritional support and ends with wound care indications. The assessment of skin lesions and general condition of the patient are important tools not only for monitoring the patient but also for the periodic up-date of the recommended strategy. […] The correct use of dressings is of paramount importance and should be according to the wound characteristics; there are different types to be use: occlusive, semiocclusive, absorptive, hydrating, hemostatic etc. […] The patient should avoid trauma and blister expansion by using foam dressings and soft sleeping and seating surfaces. Preventing local infestation by draining the blisters, using dressings and control local colonization might prove in itself a major challenge.

• #70 Epidermolysis Bullosa: Symptoms, Causes, Diagnosis, Treatment

  https://www.webmd.com/skin-problems-and-treatments/epidermolysis-bullosa-what-is

  To help prevent blisters, you have to take special care of your skin. […] Reduce friction. Use lotion to keep your skin moist and reduce friction. If you cover wounds, use only dressings that arent sticky, then loosely wrap again with rolled gauze. Wear loose-fitting clothes without tags, tight sleeves, or seams. […] Know the signs of infection. Your skin may get red or feel hot to the touch if it is becoming infected. You could also notice pus or a yellow discharge crusting at the site, a red streak under the skin, or have fever or chills. If you see any of these signs, call your doctor right away. You may need antibiotics. […] Check your diet. Many people with epidermolysis bullosa have low levels of iron, selenium, or vitamin D. Your doctor may suggest that you see a nutritionist about eating more foods that are rich in these vitamins and minerals.

• #71 Epidermolysis bullosa

  https://dermnetnz.org/topics/epidermolysis-bullosa

  Pierce, drain and dress blisters to promote healing (this should be done only by people who have received training on wound care). […] Many traditional adhesive tapes and dressings may be unsuitable for people with EB especially those with the more severe forms (eg, RDEB) as their removal can cause additional trauma to the skin. Use of advanced wound care products such as low-adherent silicone tapes and dressings is recommended. […] Oleogel-S10, containing birch triterpenes or birch bark extract, has been shown to accelerate the healing of chronic wounds in junctional and dystrophic epidermolysis bullosa. […] When EB affects other parts of the body, various cares and treatments are adopted. For example, a soft diet when the oesophagus is involved or using stool softeners for constipation, or if the patient has anal blisters. […] Clinical practice guidelines are available on the DEBRA International website including those on Oral Health care, Wound Care, Pain Management, Cancer Management.

• #72 Epidermolysis Bullosa (EB) Treatment | Children’s Hospital Colorado

  https://www.childrenscolorado.org/advances-answers/recent-articles/epidermolysis-bullosa-treatment/

  Filsuvez reduces pain and improves symptoms and quality of life. […] While the medication isnt disease-modifying, providing relief from EBs debilitating symptoms proved to be what patients actually want. […] It helps patients make their wound heal easier, reduces pain and reduces how often that they have to change their bandages, so patients can live more normal lives, says Dr. Bruckner.

• #73 Epidermolysis Bullosa (EB) Treatment | Children’s Hospital Colorado

  https://www.childrenscolorado.org/advances-answers/recent-articles/epidermolysis-bullosa-treatment/

  Filsuvez reduces pain and improves symptoms and quality of life. […] While the medication isnt disease-modifying, providing relief from EBs debilitating symptoms proved to be what patients actually want. […] It helps patients make their wound heal easier, reduces pain and reduces how often that they have to change their bandages, so patients can live more normal lives, says Dr. Bruckner.

• #74

  https://link.springer.com/article/10.1007/s13555-024-01227-8

  Targeted corrective therapies are the ultimate way of treating epidermolysis bullosa (EB). […] In vivo gene therapy is entering the stage of clinical application. Beremagene geperpavec (B-VEC) has been approved by the FDA and has become the first gene therapy available to patients with dystrophic EB. This can be considered a significant advancement. […] Treatment through drug repurposing (repositioning) is gaining attention. The application of existing drugs to target pathogenic mechanisms such as wound healing, inflammation, pruritus, and fibrosis is being considered. This approach is regarded as relatively inexpensive and highly feasible. […] It is pointed out that IL-4/13 inhibitors and JAK inhibitors, which are used to treat atopic dermatitis, show promise for treating pruritus in EB. They may provide new options for managing pruritus and skin lesions in EB.

• #75

  https://link.springer.com/article/10.1007/s13555-024-01227-8

  Targeted corrective therapies are the ultimate way of treating epidermolysis bullosa (EB). […] In vivo gene therapy is entering the stage of clinical application. Beremagene geperpavec (B-VEC) has been approved by the FDA and has become the first gene therapy available to patients with dystrophic EB. This can be considered a significant advancement. […] Treatment through drug repurposing (repositioning) is gaining attention. The application of existing drugs to target pathogenic mechanisms such as wound healing, inflammation, pruritus, and fibrosis is being considered. This approach is regarded as relatively inexpensive and highly feasible. […] It is pointed out that IL-4/13 inhibitors and JAK inhibitors, which are used to treat atopic dermatitis, show promise for treating pruritus in EB. They may provide new options for managing pruritus and skin lesions in EB.

• #76

  https://link.springer.com/article/10.1007/s13555-024-01227-8

  Targeted corrective therapies are the ultimate way of treating epidermolysis bullosa (EB). […] In vivo gene therapy is entering the stage of clinical application. Beremagene geperpavec (B-VEC) has been approved by the FDA and has become the first gene therapy available to patients with dystrophic EB. This can be considered a significant advancement. […] Treatment through drug repurposing (repositioning) is gaining attention. The application of existing drugs to target pathogenic mechanisms such as wound healing, inflammation, pruritus, and fibrosis is being considered. This approach is regarded as relatively inexpensive and highly feasible. […] It is pointed out that IL-4/13 inhibitors and JAK inhibitors, which are used to treat atopic dermatitis, show promise for treating pruritus in EB. They may provide new options for managing pruritus and skin lesions in EB.

• #77

  https://link.springer.com/article/10.1007/s13555-024-01227-8

  Targeted corrective therapies are the ultimate way of treating epidermolysis bullosa (EB). […] In vivo gene therapy is entering the stage of clinical application. Beremagene geperpavec (B-VEC) has been approved by the FDA and has become the first gene therapy available to patients with dystrophic EB. This can be considered a significant advancement. […] Treatment through drug repurposing (repositioning) is gaining attention. The application of existing drugs to target pathogenic mechanisms such as wound healing, inflammation, pruritus, and fibrosis is being considered. This approach is regarded as relatively inexpensive and highly feasible. […] It is pointed out that IL-4/13 inhibitors and JAK inhibitors, which are used to treat atopic dermatitis, show promise for treating pruritus in EB. They may provide new options for managing pruritus and skin lesions in EB.

• #78

  https://link.springer.com/article/10.1007/s13555-024-01227-8

  Regarding cell therapy, it has been shown that long-term effects are limited, and clinical application has not been achieved. Challenges remain in regenerative medicine approaches. […] New treatment concepts, such as gene editing and RNA therapy, are emerging but are still in the preclinical stage. They are mentioned as future possibilities.

• #79

  https://link.springer.com/article/10.1007/s13555-024-01227-8

  Regarding cell therapy, it has been shown that long-term effects are limited, and clinical application has not been achieved. Challenges remain in regenerative medicine approaches. […] New treatment concepts, such as gene editing and RNA therapy, are emerging but are still in the preclinical stage. They are mentioned as future possibilities.

• #80 Epidermolysis Bullosa | Doctor

  https://patient.info/doctor/epidermolysis-bullosa-pro

  Patients with possible EB should be referred to a dermatologist. In England, there are four specialist centres: Birmingham Children’s Hospital, Solihull Hospital, Great Ormond Street Children’s Hospital, London, and St Thomas’ Hospital, London. […] There is no cure for EB. Treatment is symptomatic and the primary aim is to protect the skin and stop blister formation, promote healing and prevent complications. […] Therefore, essential aspects of management of EB include: […] Prevention of trauma to the skin reduces blistering. […] Attention must be paid to facilitating wound healing. Wound care is important. Do not let crusts and fluids build up, as they facilitate infection. Topical antibiotics may be required. Avoid adhesive tape. […] Good dental hygiene and regular dental checks are recommended. Many patients with JEB and DEB develop dental caries because of enamel defects. Oral mucosal involvement can accompany severe forms of JEB and DEB. Avoid harsh mouthwashes containing alcohol. Normal saline rinses can help to clean the mucosal surfaces. […] Because of the extensive skin damage, a diet high in calories, protein and vitamins is required. Malnutrition is especially liable in the dystrophic types. A soft diet helps to reduce oral and oesophageal erosions.

• #81 Epidermolysis Bullosa | Doctor

  https://patient.info/doctor/epidermolysis-bullosa-pro

  Patients with possible EB should be referred to a dermatologist. In England, there are four specialist centres: Birmingham Children’s Hospital, Solihull Hospital, Great Ormond Street Children’s Hospital, London, and St Thomas’ Hospital, London. […] There is no cure for EB. Treatment is symptomatic and the primary aim is to protect the skin and stop blister formation, promote healing and prevent complications. […] Therefore, essential aspects of management of EB include: […] Prevention of trauma to the skin reduces blistering. […] Attention must be paid to facilitating wound healing. Wound care is important. Do not let crusts and fluids build up, as they facilitate infection. Topical antibiotics may be required. Avoid adhesive tape. […] Good dental hygiene and regular dental checks are recommended. Many patients with JEB and DEB develop dental caries because of enamel defects. Oral mucosal involvement can accompany severe forms of JEB and DEB. Avoid harsh mouthwashes containing alcohol. Normal saline rinses can help to clean the mucosal surfaces. […] Because of the extensive skin damage, a diet high in calories, protein and vitamins is required. Malnutrition is especially liable in the dystrophic types. A soft diet helps to reduce oral and oesophageal erosions.

• #82 Epidermolysis Bullosa | Doctor

  https://patient.info/doctor/epidermolysis-bullosa-pro

  Patients with possible EB should be referred to a dermatologist. In England, there are four specialist centres: Birmingham Children’s Hospital, Solihull Hospital, Great Ormond Street Children’s Hospital, London, and St Thomas’ Hospital, London. […] There is no cure for EB. Treatment is symptomatic and the primary aim is to protect the skin and stop blister formation, promote healing and prevent complications. […] Therefore, essential aspects of management of EB include: […] Prevention of trauma to the skin reduces blistering. […] Attention must be paid to facilitating wound healing. Wound care is important. Do not let crusts and fluids build up, as they facilitate infection. Topical antibiotics may be required. Avoid adhesive tape. […] Good dental hygiene and regular dental checks are recommended. Many patients with JEB and DEB develop dental caries because of enamel defects. Oral mucosal involvement can accompany severe forms of JEB and DEB. Avoid harsh mouthwashes containing alcohol. Normal saline rinses can help to clean the mucosal surfaces. […] Because of the extensive skin damage, a diet high in calories, protein and vitamins is required. Malnutrition is especially liable in the dystrophic types. A soft diet helps to reduce oral and oesophageal erosions.

• #83 Epidermolysis Bullosa | Doctor

  https://patient.info/doctor/epidermolysis-bullosa-pro

  Patients with possible EB should be referred to a dermatologist. In England, there are four specialist centres: Birmingham Children’s Hospital, Solihull Hospital, Great Ormond Street Children’s Hospital, London, and St Thomas’ Hospital, London. […] There is no cure for EB. Treatment is symptomatic and the primary aim is to protect the skin and stop blister formation, promote healing and prevent complications. […] Therefore, essential aspects of management of EB include: […] Prevention of trauma to the skin reduces blistering. […] Attention must be paid to facilitating wound healing. Wound care is important. Do not let crusts and fluids build up, as they facilitate infection. Topical antibiotics may be required. Avoid adhesive tape. […] Good dental hygiene and regular dental checks are recommended. Many patients with JEB and DEB develop dental caries because of enamel defects. Oral mucosal involvement can accompany severe forms of JEB and DEB. Avoid harsh mouthwashes containing alcohol. Normal saline rinses can help to clean the mucosal surfaces. […] Because of the extensive skin damage, a diet high in calories, protein and vitamins is required. Malnutrition is especially liable in the dystrophic types. A soft diet helps to reduce oral and oesophageal erosions.

• #84 Care for Newborns with EB | debra of America

  https://www.debra.org/how/care-newborns-eb

  Daily dressing changes are recommended for your newborn with Epidermolysis Bullosa (EB) and can be coordinated with a bath or cleansing of the skin. […] A mild antibiotic ointment may be applied to the area to aid in the prevention of infection. […] Mild, over-the-counter antibiotics (Polysporin, Bacitracin) are effective in preventing infection and may be rotated every month or two to discourage bacterial resistance. […] It is important to chart the growth of an infant/child with EB. Such charts provide essential information for evaluating the adequacy of the diet. […] Some families find benefit from wrapping some high risk areas even when there are no wounds, in order to prevent damage.

• #85 Epidermolysis bullosa

  https://www.rch.org.au/kidsinfo/fact_sheets/epidermolysis_bullosa/

  Blisters should be popped with a sterile needle as this will make your child feel more comfortable and will stop the blisters from getting bigger. […] Your child may be eligible to access dressings via the Government-funded National Epidermolysis Bullosa Dressings Scheme (NEBDS). […] There is no specific diet required for a child with EB. […] Adequate intake of fluids and fibre is recommended to help prevent constipation. […] The main treatment for EB is good wound care and nutrition. This assists wound healing and helps to prevent infection.

• #86 Epidermolysis bullosa

  https://www.rch.org.au/kidsinfo/fact_sheets/epidermolysis_bullosa/

  Blisters should be popped with a sterile needle as this will make your child feel more comfortable and will stop the blisters from getting bigger. […] Your child may be eligible to access dressings via the Government-funded National Epidermolysis Bullosa Dressings Scheme (NEBDS). […] There is no specific diet required for a child with EB. […] Adequate intake of fluids and fibre is recommended to help prevent constipation. […] The main treatment for EB is good wound care and nutrition. This assists wound healing and helps to prevent infection.

• #87 Epidermolysis Bullosa: Symptoms, Causes, Diagnosis, Treatment

  https://www.webmd.com/skin-problems-and-treatments/epidermolysis-bullosa-what-is

  To help prevent blisters, you have to take special care of your skin. […] Reduce friction. Use lotion to keep your skin moist and reduce friction. If you cover wounds, use only dressings that arent sticky, then loosely wrap again with rolled gauze. Wear loose-fitting clothes without tags, tight sleeves, or seams. […] Know the signs of infection. Your skin may get red or feel hot to the touch if it is becoming infected. You could also notice pus or a yellow discharge crusting at the site, a red streak under the skin, or have fever or chills. If you see any of these signs, call your doctor right away. You may need antibiotics. […] Check your diet. Many people with epidermolysis bullosa have low levels of iron, selenium, or vitamin D. Your doctor may suggest that you see a nutritionist about eating more foods that are rich in these vitamins and minerals.

• #88 Epidermolysis Bullosa | Doctor

  https://patient.info/doctor/epidermolysis-bullosa-pro

  Patients with possible EB should be referred to a dermatologist. In England, there are four specialist centres: Birmingham Children’s Hospital, Solihull Hospital, Great Ormond Street Children’s Hospital, London, and St Thomas’ Hospital, London. […] There is no cure for EB. Treatment is symptomatic and the primary aim is to protect the skin and stop blister formation, promote healing and prevent complications. […] Therefore, essential aspects of management of EB include: […] Prevention of trauma to the skin reduces blistering. […] Attention must be paid to facilitating wound healing. Wound care is important. Do not let crusts and fluids build up, as they facilitate infection. Topical antibiotics may be required. Avoid adhesive tape. […] Good dental hygiene and regular dental checks are recommended. Many patients with JEB and DEB develop dental caries because of enamel defects. Oral mucosal involvement can accompany severe forms of JEB and DEB. Avoid harsh mouthwashes containing alcohol. Normal saline rinses can help to clean the mucosal surfaces. […] Because of the extensive skin damage, a diet high in calories, protein and vitamins is required. Malnutrition is especially liable in the dystrophic types. A soft diet helps to reduce oral and oesophageal erosions.

• #89 Epidermolysis Bullosa | Doctor

  https://patient.info/doctor/epidermolysis-bullosa-pro

  Patients with possible EB should be referred to a dermatologist. In England, there are four specialist centres: Birmingham Children’s Hospital, Solihull Hospital, Great Ormond Street Children’s Hospital, London, and St Thomas’ Hospital, London. […] There is no cure for EB. Treatment is symptomatic and the primary aim is to protect the skin and stop blister formation, promote healing and prevent complications. […] Therefore, essential aspects of management of EB include: […] Prevention of trauma to the skin reduces blistering. […] Attention must be paid to facilitating wound healing. Wound care is important. Do not let crusts and fluids build up, as they facilitate infection. Topical antibiotics may be required. Avoid adhesive tape. […] Good dental hygiene and regular dental checks are recommended. Many patients with JEB and DEB develop dental caries because of enamel defects. Oral mucosal involvement can accompany severe forms of JEB and DEB. Avoid harsh mouthwashes containing alcohol. Normal saline rinses can help to clean the mucosal surfaces. […] Because of the extensive skin damage, a diet high in calories, protein and vitamins is required. Malnutrition is especially liable in the dystrophic types. A soft diet helps to reduce oral and oesophageal erosions.

• #90 Epidermolysis Bullosa | Doctor

  https://patient.info/doctor/epidermolysis-bullosa-pro

  Patients with possible EB should be referred to a dermatologist. In England, there are four specialist centres: Birmingham Children’s Hospital, Solihull Hospital, Great Ormond Street Children’s Hospital, London, and St Thomas’ Hospital, London. […] There is no cure for EB. Treatment is symptomatic and the primary aim is to protect the skin and stop blister formation, promote healing and prevent complications. […] Therefore, essential aspects of management of EB include: […] Prevention of trauma to the skin reduces blistering. […] Attention must be paid to facilitating wound healing. Wound care is important. Do not let crusts and fluids build up, as they facilitate infection. Topical antibiotics may be required. Avoid adhesive tape. […] Good dental hygiene and regular dental checks are recommended. Many patients with JEB and DEB develop dental caries because of enamel defects. Oral mucosal involvement can accompany severe forms of JEB and DEB. Avoid harsh mouthwashes containing alcohol. Normal saline rinses can help to clean the mucosal surfaces. […] Because of the extensive skin damage, a diet high in calories, protein and vitamins is required. Malnutrition is especially liable in the dystrophic types. A soft diet helps to reduce oral and oesophageal erosions.

• #91 Epidermolysis Bullosa | Doctor

  https://patient.info/doctor/epidermolysis-bullosa-pro

  Patients with possible EB should be referred to a dermatologist. In England, there are four specialist centres: Birmingham Children’s Hospital, Solihull Hospital, Great Ormond Street Children’s Hospital, London, and St Thomas’ Hospital, London. […] There is no cure for EB. Treatment is symptomatic and the primary aim is to protect the skin and stop blister formation, promote healing and prevent complications. […] Therefore, essential aspects of management of EB include: […] Prevention of trauma to the skin reduces blistering. […] Attention must be paid to facilitating wound healing. Wound care is important. Do not let crusts and fluids build up, as they facilitate infection. Topical antibiotics may be required. Avoid adhesive tape. […] Good dental hygiene and regular dental checks are recommended. Many patients with JEB and DEB develop dental caries because of enamel defects. Oral mucosal involvement can accompany severe forms of JEB and DEB. Avoid harsh mouthwashes containing alcohol. Normal saline rinses can help to clean the mucosal surfaces. […] Because of the extensive skin damage, a diet high in calories, protein and vitamins is required. Malnutrition is especially liable in the dystrophic types. A soft diet helps to reduce oral and oesophageal erosions.

• #92 Epidermolysis bullosa

  https://dermnetnz.org/topics/epidermolysis-bullosa

  Pierce, drain and dress blisters to promote healing (this should be done only by people who have received training on wound care). […] Many traditional adhesive tapes and dressings may be unsuitable for people with EB especially those with the more severe forms (eg, RDEB) as their removal can cause additional trauma to the skin. Use of advanced wound care products such as low-adherent silicone tapes and dressings is recommended. […] Oleogel-S10, containing birch triterpenes or birch bark extract, has been shown to accelerate the healing of chronic wounds in junctional and dystrophic epidermolysis bullosa. […] When EB affects other parts of the body, various cares and treatments are adopted. For example, a soft diet when the oesophagus is involved or using stool softeners for constipation, or if the patient has anal blisters. […] Clinical practice guidelines are available on the DEBRA International website including those on Oral Health care, Wound Care, Pain Management, Cancer Management.

• #93 Epidermolysis Bullosa Acquisita Treatment & Management: Approach Considerations, Medical Care, Consultations

  https://emedicine.medscape.com/article/1063083-treatment

  It is important to monitor and prevent complications of prolonged systemic corticosteroid therapy. The American College of Rheumatology 2010 guidelines for prevention and treatment of glucocorticoid-induced osteoporosis recommend calcium and vitamin D supplementation, lifestyle modification counseling, and consideration of bisphosphonate therapy. […] The indication for bisphosphonate therapy is based on risk stratification considering age, steroid dose, duration of treatment, and Fracture Risk Assessment Tool (FRAX) score. Prolonged corticosteroid treatment is also a risk factor for cataracts, and patients should be screened by an ophthalmologist.

• #94 Epidermolysis Bullosa Acquisita Treatment & Management: Approach Considerations, Medical Care, Consultations

  https://emedicine.medscape.com/article/1063083-treatment

  It is important to monitor and prevent complications of prolonged systemic corticosteroid therapy. The American College of Rheumatology 2010 guidelines for prevention and treatment of glucocorticoid-induced osteoporosis recommend calcium and vitamin D supplementation, lifestyle modification counseling, and consideration of bisphosphonate therapy. […] The indication for bisphosphonate therapy is based on risk stratification considering age, steroid dose, duration of treatment, and Fracture Risk Assessment Tool (FRAX) score. Prolonged corticosteroid treatment is also a risk factor for cataracts, and patients should be screened by an ophthalmologist.

• #95 Epidermolysis Bullosa Acquisita Treatment & Management: Approach Considerations, Medical Care, Consultations

  https://emedicine.medscape.com/article/1063083-treatment

  It is important to monitor and prevent complications of prolonged systemic corticosteroid therapy. The American College of Rheumatology 2010 guidelines for prevention and treatment of glucocorticoid-induced osteoporosis recommend calcium and vitamin D supplementation, lifestyle modification counseling, and consideration of bisphosphonate therapy. […] The indication for bisphosphonate therapy is based on risk stratification considering age, steroid dose, duration of treatment, and Fracture Risk Assessment Tool (FRAX) score. Prolonged corticosteroid treatment is also a risk factor for cataracts, and patients should be screened by an ophthalmologist.

• #96 Epidermolysis Bullosa Acquisita Treatment & Management: Approach Considerations, Medical Care, Consultations

  https://emedicine.medscape.com/article/1063083-treatment

  It is important to monitor and prevent complications of prolonged systemic corticosteroid therapy. The American College of Rheumatology 2010 guidelines for prevention and treatment of glucocorticoid-induced osteoporosis recommend calcium and vitamin D supplementation, lifestyle modification counseling, and consideration of bisphosphonate therapy. […] The indication for bisphosphonate therapy is based on risk stratification considering age, steroid dose, duration of treatment, and Fracture Risk Assessment Tool (FRAX) score. Prolonged corticosteroid treatment is also a risk factor for cataracts, and patients should be screened by an ophthalmologist.

• #97 Epidermolysis bullosa Information | Mount Sinai – New York

  https://www.mountsinai.org/health-library/diseases-conditions/epidermolysis-bullosa

  Genetic counseling is recommended for prospective parents who have a family history of any form of epidermolysis bullosa. […] During pregnancy, a test called chorionic villus sampling may be used to test the baby. For couples at high risk of having a child with EB, the test can be done as early as week 8 to 10 of pregnancy. Talk to your provider. […] To prevent skin damage and blistering, wear padding around injury-prone areas such as the elbows, knees, ankles, and buttocks. Avoid contact sports. […] If you have EB acquisita and are on steroids for longer than 1 month, you may need calcium and vitamin D supplements. These supplements may help prevent osteoporosis (thinning bones).

• #98 Epidermolysis Bullosa (EB): Definition, Causes, Symptoms, Treatments

  https://www.apollo247.com/blog/article/epidermolysis-bullosa-causes-symptoms-treatment-prevention

  Preventing EB starts with understanding the genetic aspects of the disease. Here are some prevention methods that can be pursued: […] Consulting with a genetic counsellor can help families understand the risk of passing on EB to their children. They can provide information about inheritance patterns, recurrence risk, and options for family planning. […] For families at risk of having a child with EB disease, prenatal testing can be done to detect the presence of specific gene mutations associated with the disease. Testing options include chorionic villus sampling (CVS) and amniocentesis, which can identify EB during pregnancy. […] Early detection of EB is crucial for managing the condition effectively. Regular check-ups with a dermatologist or an EB specialist can help identify symptoms early on and initiate appropriate treatment plans.

• #99 Epidermolysis Bullosa: Symptoms, Causes, Diagnosis, and Treatment

  https://www.verywellhealth.com/epidermolysis-bullosa-overview-4589859

  Symptom prevention is key […] One of the most important things to do when managing EB is to prevent the formation of blisters as much as possible. Even minor trauma may cause a blister to form. Some prevention techniques are as follows: be very gentle when handling the skin of someone with EB; use loosely fitting, soft clothes and padded shoes; children in diapers may need extra padding at the legs and waist (remove elastic bands); avoid adhesive or semi-adhesive bandages on the skin surface; trim your child’s nails regularly to help prevent scratching; try to keep the skin cool—nothing hot should be applied to the skin; keep the skin moist using gentle lubricants such as petroleum jelly; cover hard surfaces to avoid skin trauma. […] It’s also important that people with EB have regular skin examinations at least once a year to check for any early signs of skin cancer.

• #100 Epidermolysis bullosa: Tips dermatologists give parents

  https://www.aad.org/public/diseases/a-z/epidermolysis-bullosa-self-care

  Make appointments for full-body skin exams. Regardless of the type of EB your child has, dermatologists recommend full-body skin exams beginning at age 10. […] Keep learning about EB. The more you know, the better you can care for your child. […] Try to have your child evaluated at one of the EB clinics in the United States at some point. Being seen by a team of specialists at an EB clinic helps to ensure that your child gets the required care and that you are aware of available resources. […] Consider sending your child to Camp Discovery for one week. It can be frightening to think about being away from your child for a week, especially if your child needs daily medical care. Camp Discovery is equipped to handle these needs while giving your child an opportunity to experience what it’s like to go to summer camp.

• #101 Epidermolysis bullosa: Tips dermatologists give parents

  https://www.aad.org/public/diseases/a-z/epidermolysis-bullosa-self-care

  Try to reduce blisters from diapers and clothes with these tips: Use disposable diapers with Velcro fasteners instead of tapes, which could stick to the child’s skin. […] Prevent medical gloves from injuring your child’s skin. The latex or vinyl may rub your child’s skin, which can cause blisters. To help prevent this, dermatologists recommend: If you can, try to stop wearing gloves during wound care: Instead of wearing gloves, wash your hands frequently while caring for your child’s skin. […] Report complications as soon as they arise. Blisters can develop just about anywhere, and sometimes scars appear when the skin heals. Both can lead to unexpected complications. With early intervention, many complications can be lessened or prevented. […] Encourage play and movement. It’s understandably hard to encourage your child to play and move about when the skin is so fragile, but children with EB should move as much as they can. It is better for a child to get a blister now and again than to be too afraid to move.

• #102 Epidermolysis Bullosa | Doctor

  https://patient.info/doctor/epidermolysis-bullosa-pro

  Patients with possible EB should be referred to a dermatologist. In England, there are four specialist centres: Birmingham Children’s Hospital, Solihull Hospital, Great Ormond Street Children’s Hospital, London, and St Thomas’ Hospital, London. […] There is no cure for EB. Treatment is symptomatic and the primary aim is to protect the skin and stop blister formation, promote healing and prevent complications. […] Therefore, essential aspects of management of EB include: […] Prevention of trauma to the skin reduces blistering. […] Attention must be paid to facilitating wound healing. Wound care is important. Do not let crusts and fluids build up, as they facilitate infection. Topical antibiotics may be required. Avoid adhesive tape. […] Good dental hygiene and regular dental checks are recommended. Many patients with JEB and DEB develop dental caries because of enamel defects. Oral mucosal involvement can accompany severe forms of JEB and DEB. Avoid harsh mouthwashes containing alcohol. Normal saline rinses can help to clean the mucosal surfaces. […] Because of the extensive skin damage, a diet high in calories, protein and vitamins is required. Malnutrition is especially liable in the dystrophic types. A soft diet helps to reduce oral and oesophageal erosions.

• #103 Overview of the management of epidermolysis bullosa – UpToDate

  https://www.uptodate.com/contents/overview-of-the-management-of-epidermolysis-bullosa/print

  Epidermolysis bullosa (EB) is a heterogeneous group of hereditary mechanobullous diseases characterized by varying degrees of skin and mucosa fragility caused by mutations that affect skin structural proteins. […] The management of patients with EB is largely supportive and includes wound care and prevention and treatment of complications. […] Treatment is largely supportive and includes wound care, control of infection, nutritional support, and prevention and treatment of complications. […] This multidisciplinary approach is emphasized by published consensus recommendations for the management of inherited EB.

• #104 Epidermolysis bullosa: Tips dermatologists give parents

  https://www.aad.org/public/diseases/a-z/epidermolysis-bullosa-self-care

  Make appointments for full-body skin exams. Regardless of the type of EB your child has, dermatologists recommend full-body skin exams beginning at age 10. […] Keep learning about EB. The more you know, the better you can care for your child. […] Try to have your child evaluated at one of the EB clinics in the United States at some point. Being seen by a team of specialists at an EB clinic helps to ensure that your child gets the required care and that you are aware of available resources. […] Consider sending your child to Camp Discovery for one week. It can be frightening to think about being away from your child for a week, especially if your child needs daily medical care. Camp Discovery is equipped to handle these needs while giving your child an opportunity to experience what it’s like to go to summer camp.

• #105 Epidermolysis bullosa: Tips dermatologists give parents

  https://www.aad.org/public/diseases/a-z/epidermolysis-bullosa-self-care

  Make appointments for full-body skin exams. Regardless of the type of EB your child has, dermatologists recommend full-body skin exams beginning at age 10. […] Keep learning about EB. The more you know, the better you can care for your child. […] Try to have your child evaluated at one of the EB clinics in the United States at some point. Being seen by a team of specialists at an EB clinic helps to ensure that your child gets the required care and that you are aware of available resources. […] Consider sending your child to Camp Discovery for one week. It can be frightening to think about being away from your child for a week, especially if your child needs daily medical care. Camp Discovery is equipped to handle these needs while giving your child an opportunity to experience what it’s like to go to summer camp.

• #106 Epidermolysis bullosa: Tips dermatologists give parents

  https://www.aad.org/public/diseases/a-z/epidermolysis-bullosa-self-care

  Make appointments for full-body skin exams. Regardless of the type of EB your child has, dermatologists recommend full-body skin exams beginning at age 10. […] Keep learning about EB. The more you know, the better you can care for your child. […] Try to have your child evaluated at one of the EB clinics in the United States at some point. Being seen by a team of specialists at an EB clinic helps to ensure that your child gets the required care and that you are aware of available resources. […] Consider sending your child to Camp Discovery for one week. It can be frightening to think about being away from your child for a week, especially if your child needs daily medical care. Camp Discovery is equipped to handle these needs while giving your child an opportunity to experience what it’s like to go to summer camp.

• #107

  https://pmc.ncbi.nlm.nih.gov/articles/PMC7065089/

  This guideline was designed to provide service providers and users with an evidencebased set of current best practice guidelines for people and their families and carers, living with epidermolysis bullosa (EB). […] A podiatry education programme should be offered from birth, enabling carers, patients and staff to recognize and avoid causes of blistering and wounds, including footwear, dressings, foot biomechanics, heat and sweating. […] The usual technique is to lance intact blisters with a sterile needle at their lowest point to facilitate fluid drainage by gravity and to stop blisters from refilling. […] Generally the management of EB tends to be supportive and is aimed at preventing blistering by reducing friction and the amount of mechanical trauma to the feet. […] Prevention is key and involves minimizing friction and mechanical trauma to the feet.

• #108 Epidermolysis bullosa

  https://dermnetnz.org/topics/epidermolysis-bullosa

  Pierce, drain and dress blisters to promote healing (this should be done only by people who have received training on wound care). […] Many traditional adhesive tapes and dressings may be unsuitable for people with EB especially those with the more severe forms (eg, RDEB) as their removal can cause additional trauma to the skin. Use of advanced wound care products such as low-adherent silicone tapes and dressings is recommended. […] Oleogel-S10, containing birch triterpenes or birch bark extract, has been shown to accelerate the healing of chronic wounds in junctional and dystrophic epidermolysis bullosa. […] When EB affects other parts of the body, various cares and treatments are adopted. For example, a soft diet when the oesophagus is involved or using stool softeners for constipation, or if the patient has anal blisters. […] Clinical practice guidelines are available on the DEBRA International website including those on Oral Health care, Wound Care, Pain Management, Cancer Management.

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