Materiały źródłowe

• #1 Ehlers-Danlos syndromes: Overview of the management – UpToDate

  https://www.uptodate.com/contents/ehlers-danlos-syndromes-overview-of-the-management

  Ehlers-Danlos syndrome (EDS) is the term used for a group of genetic disorders of connective tissue that are characterized by skin hyperextensibility, joint hypermobility, and/or tissue fragility. There are no medical treatments that can reverse or „cure” EDS. Therefore, management of EDS emphasizes patient and clinician education for the prevention and early recognition of injuries and complications. […] Most interventions used in patients with EDS have not been evaluated in randomized trials. […] This information can help primary care providers and other non-EDS specialists to support and educate patients with EDS and to coordinate care and referrals to appropriate specialists, depending upon the type and severity of EDS. Patients with EDS should be managed in collaboration with a relevant expert in clinical genetics or a provider with special expertise in EDS (ie, a „care team”). […] Strategies for enhancement of function and prevention of injuries for patients with Ehlers-Danlos syndrome.

• #2 Ehlers-Danlos syndromes: Overview of the management – UpToDate

  https://www.uptodate.com/contents/ehlers-danlos-syndromes-overview-of-the-management/print

  Ehlers-Danlos syndrome (EDS) is the term used for a group of genetic disorders of connective tissue that are characterized by skin hyperextensibility, joint hypermobility, and/or tissue fragility. There are no medical treatments that can reverse or „cure” EDS. Therefore, management of EDS emphasizes patient and clinician education for the prevention and early recognition of injuries and complications. […] Patients with specific clinical manifestations may benefit from targeted interventions (eg, treatment of diffuse musculoskeletal pain). In addition, patients with certain forms of EDS require monitoring for potential complications (eg, arterial and valvular heart disease).

• #3 Ehlers-Danlos Syndrome + Natural Ways to Help Symptoms – Dr. Axe

  https://draxe.com/health/ehlers-danlos-syndrome/

  Ehlers-Danlos syndrome is a group of genetic disorders that cause loose joints and skin. […] EDS is not curable, but it is treatable. In addition, many people can take preventive steps to keep their health as good as possible. […] There are two ways to approach prevention in Ehlers-Danlos Syndrome: trying to avoid passing it on to your children and trying to prevent symptoms of EDS once it is diagnosed. […] People with Ehlers-Danlos Syndrome can often reduce their risk of serious complications by following some preventive lifestyle tips. […] Tips for naturally managing EDS and preventing some symptoms include: Avoid physical stress, Consider dietary supplements, Get low-impact exercise and physical therapy, Use assistive devices, Avoid injury and invasive procedures, Baby your skin, Get help coping.

• #4 What Causes Ehlers Danlos Syndrome? | Marfan Foundation

  https://marfan.org/conditions/ehlers-danlos/

  Ehlers-Danlos syndrome is a diverse connective tissue condition that has thirteen different subtypes. This group of genetic connective tissue conditions is commonly characterized by unstable, hypermobile joints, loose, stretchy skin, and fragile tissues. However, some subtypes, such as Vascular Ehlers-Danlos and Kyphoscoliotic Ehlers-Danlos, are prone to life-threatening arterial dissections and ruptures. […] It is very important that people with any form of Ehlers-Danlos syndrome are diagnosed early so they can begin the right treatments to prevent serious complications. […] It is very important that people with any type of Ehlers-Danlos syndrome are diagnosed early so they can begin the right treatments to prevent serious complications. […] Following your doctors recommendations for medication, monitoring, and physical activity gives you the best chance of avoiding a serious complication of Ehlers-Danlos syndrome. Still, there are no guarantees. That’s why it’s important for you to learn about the medical problems that could arise and require immediate medical treatment.

• #5

  https://www.chronicpainpartners.com/preventive-care-recommendations-for-patients-with-the-ehlers-danlos-syndromes/

  Preventive medicine is the practice of recommending health care to improve the patients well-being and to attempt to prevent disease, disability, and death. […] People with the Ehlers-Danlos syndromes, like all other people, can benefit from preventive care recommended by the USPSTF and specialty organizations. However, there are additional tests and screenings recommended for patients with EDS in particular. In other cases, a standard preventive screening may need to be done differently for a patient with EDS in order to be safe and helpful. […] Many recommendations for EDS-specific preventive care are based on expert opinions, rather than formal studies and research. […] You and your doctor should make sure that the care you receive, preventive or otherwise, is right for you. […] Lastly, remember: it’s your decision what preventive screenings, tests, and care you get. Your medical providers will recommend screenings and care to you based on (hopefully) the most recent guidelines.

• #6 Ehlers-Danlos syndrome – Symptoms and causes – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125

  If you have a personal or family history of Ehlers-Danlos syndrome and you’re thinking about starting a family, you may benefit from talking to a genetic counselor a health care professional trained to assess the risk of inherited disorders. Genetic counseling can help you understand the inheritance pattern of the type of Ehlers-Danlos syndrome that affects you and the risks it poses for your children.

• #7 Ehlers-Danlos syndrome | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/ehlers-danlos-syndrome

  If you have a personal or family history of Ehlers-Danlos syndrome and you’re thinking about starting a family, you may benefit from talking to a genetic counselor a health care professional trained to assess the risk of inherited disorders. Genetic counseling can help you understand the inheritance pattern of the type of Ehlers-Danlos syndrome that affects you and the risks it poses for your children. […] If you have Ehlers-Danlos syndrome, it’s important to prevent injuries. Here are a few things you can do to safeguard yourself. […] Choose sports wisely. Walking, swimming, tai chi, recreational biking, or using an elliptical machine or a stationary bike are all good choices. Avoid contact sports, weightlifting and other activities that increase your risk of injury. Minimize stress on your hips, knees and ankles. […] Promote safe activity. Encourage your child to participate in physical activities with appropriate boundaries. Discourage contact sports while encouraging non-weight-bearing activities, such as swimming. Your child’s doctor or physical therapist also may have recommendations.

• #8 Ehlers-Danlos syndrome Information | Mount Sinai – New York

  https://www.mountsinai.org/health-library/diseases-conditions/ehlers-danlos-syndrome

  Genetic counseling is recommended for prospective parents with a family history of EDS. Those planning to start a family should be aware of the type of EDS they have and how it is passed down to children. This can be determined through testing and evaluations suggested by your provider or genetic counselor. […] Identifying any significant health risks may help prevent severe complications by vigilant screening and lifestyle alterations.

• #9 Ehlers-Danlos Syndrome: Types, Symptoms, Treatment

  https://www.health.com/ehlers-danlos-syndrome-overview-7497403

  Currently, there is no way to prevent the development of Ehlers-Danlos syndrome. If you are concerned about passing on EDS to your children you can discuss genetic testing with a geneticist. […] Knowing your family history and discussing it with your healthcare provider can be helpful in determining the likelihood of passing EDS from one generation to another in your family. Discussions with medical professionals can provide people with EDS the necessary education that can empower individualized decision-making and family planning.

• #10

  https://www.chronicpainpartners.com/preventive-care-recommendations-for-patients-with-the-ehlers-danlos-syndromes/

  Any EDS patients with any type of EDS should avoid orthopedic surgery if possible to preserve and protect joint function; to avoid complications and poor healing outcomes. […] Any EDS patients with any type of EDS should receive patient education to prevent and recognize injuries and complications; to recognize potentially serious symptoms or conditions that require emergency medical attention. […] Any EDS patients with any type of EDS should receive physical, occupational, and/or speech therapy to prevent misuse of joints, to provide strengthening for muscles, to manage symptoms, to increase proprioception, to aid with joint stability, protection, and preservation, to correct dysfunction, and to help prevent arthritis. […] Any EDS patients with any type of EDS should have regular dental cleanings and examinations to identify and assist with gingivitis, gum recession, TMJ pain, and more.

• #11 Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders | AAFP

  https://www.aafp.org/pubs/afp/issues/2021/0415/p481.html

  The central goals of therapy are managing symptoms, preventing joint injury, and educating patients about their condition. […] Early multidisciplinary treatment that includes physical, occupational, and cognitive behavior therapy; orthotics; and community and specialty support may optimize outcomes in patients with joint hypermobility symptoms. […] Educating patients about lifestyle modifications, management options, and expectations is one of the most important interventions. Encouraging the optimization of sleep, joint protection through the proper amount of regular physical exercise (low impact and low resistance), weight control, avoidance of substance use (e.g., alcohol, nicotine), and the consumption of a healthy diet can decrease pain, injuries, and fatigue and support mobility and functionality.

• #12 Ehlers-Danlos Syndrome (EDS) | Manhattan Pain Medicine, PLLC

  https://www.manhattanpainmedicine.com/conditions/ehlers-danlos-syndrome-eds/

  Avoid High-Risk Activities: Prevent worsening symptoms by staying away from activities causing joint dislocations or injuries. […] These measures, while not preventing EDS entirely due to its genetic nature, significantly contribute to symptom management, complication reduction, and overall well-being for individuals with EDS.

• #13 Principles of Injury Prevention in Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) – Ask the Experts 4816

  https://www.physicaltherapy.com/ask-the-experts/principles-injury-prevention-in-ehlers-4816

  Number one, pain is information. Do not ignore or push through pain in work or sport. […] Patients with EDS should be encouraged to avoid high-impact activities, including running and jumping, contact sports. Children should be discouraged from gymnastics, ballet, and cheerleading. […] They should choose an exercise with joint protection and safety in mind. Exercise that promotes balance, posture, and stability, like Tai Chi and Pilates is important. […] It’s really important for patients with EDS to prevent falls and burns, to be extra careful about cuts, fractures, and bruises, which can take longer to heal and may scar poorly. […] Finally, we always want to recommend good foot support. They should choose thick, flexible soles with low heels and we often recommend considering custom orthotics to really support those feet.

• #14 Ehlers-Danlos Syndrome: Symptoms, Causes, Diagnosis, Treatment, and Prevention

  https://www.everydayhealth.com/genetic-diseases/ehlers-danlos-syndrome/

  There isnt a way to prevent Ehlers-Danlos syndrome. A genetic counselor can help provide you with guidance if youre concerned about passing EDS on to your children. […] One of the best things people with EDS can do is to work on improving their physical fitness, says Brown, starting with isometric, low-impact exercises. […] Injury prevention is important if you have Ehlers-Danlos. Recommendations include: […] Avoid contact sports. Most experts recommend choosing low-impact activities over contact sports to help you remain injury free during exercise. […] Wear supportive shoes. To help prevent rolling your ankle, wear laced boots with good arch support. […] Invest in your sleep. Body pillows and super-dense foam mattresses can help provide support and cushioning for joints. […] Protect your skin. Using sunscreen and mild soap can help protect the skin.

• #15 Ehlers-Danlos syndrome – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/diagnosis-treatment/drc-20362149

  There is no cure for Ehlers-Danlos syndrome, but treatment can help you manage your symptoms and prevent further complications. […] If you have Ehlers-Danlos syndrome, it’s important to prevent injuries. Here are a few things you can do to safeguard yourself. […] To help prevent ankle sprains, wear laced boots with good arch support. […] Encourage your child to participate in physical activities with appropriate boundaries. Discourage contact sports while encouraging non-weight-bearing activities, such as swimming.

• #16 Ehlers-Danlos Syndrome – Rheumatology Advisor

  https://www.rheumatologyadvisor.com/ddi/ehlers-danlos-syndrome/

  Prevention revolves around patient counseling regarding the limitation of high-risk activities such as contact sports and weightlifting. […] Treatment is generally focused on implementing preventative measures against disease progression and life-threatening complications. […] Careful monitoring of Ehlers-Danlos patients is recommended. Regular hypertension and arterial disease screening should be conducted, as these increase the complications associated with blood vessel fragility. […] Patients with hypermobility Ehlers-Danlos may especially benefit from low-resistance exercise, physical therapy, and assistive devices like braces, scooters, and wheelchairs.

• #17 Genetics of Ehlers-Danlos Syndrome Treatment & Management: Medical Care, Surgical Care, Consultations

  https://emedicine.medscape.com/article/943567-treatment

  Once a diagnosis of EDS is made, preventative measures should be taken. Wearing a MedicAlert bracelet identifying a patient with EDS can help in case of a life-threatening emergency, such as arterial rupture or carotid-cavernous fistula. […] Monitor patients for scoliosis. Instruct them to avoid excessive or repetitive lifting and other activities that produce undue strain or stress on their already hypermobile joints. Recommend low-resistance exercise to help increase muscle tone and stabilize loose joints. […] Instruct patients with Ehlers-Danlos syndrome to avoid excessive or repetitive heavy lifting and other movements that produce undue strain or stress on their already hypermobile joints (eg, finger hyperextension that occurs with pushing off of a wall with the palms of the hands).

• #18 Vascular Ehlers-Danlos Treatment and Management-The VEDS Movement

  https://thevedsmovement.org/what-to-expect/vascular-ehlers-danlos-syndrome-treatment-and-management/

  It is recommended that those with Vascular Ehlers-Danlos Syndrome (VEDS) follow these treatment and management recommendations: […] Affected individuals should seek immediate medical attention for sudden and unexplained pain. Vascular EDS is considered the most serious form of Ehlers-Danlos Syndrome due to the possibility of arterial or organ rupture. […] Patients should establish an ongoing relationship with these physicians before a major medical event occurs. […] In general, surgical procedures are more likely to be successful when the treating physician is aware of the diagnosis of VEDS and its associated tissue fragility. […] Pregnant women with VEDS should be followed in a high-risk obstetric program. […] People with VEDS should avoid contact sports, heavy lifting or muscle straining, and activities that may include sudden impact or jarring of the body.

• #19

  https://www.hingehealth.com/resources/articles/ehlers-danlos-syndrome/

  We know that might sound alarming, but it is possible to exercise safely with this condition, especially when you work with a doctor or other providers, like a physical therapist, for guidance. […] It’s important for people with Ehlers-Danlos Syndrome to engage in physical activity at a pace that works for them, and to do targeted exercises that improve symptoms without posing additional risk. […] Exercise is a front-line strategy for managing hEDS. […] Targeted exercises can help reduce risks of injury during exercise while also ensuring you actually see improvement in your hEDS symptoms over time. […] Exercise, Dr. Vinci explains, is important because it strengthens your connective tissue and muscles so they can better protect your joints. […] Knowing when to take a break is also important in preventing injury and managing fatigue.

• #20

  https://www.hingehealth.com/resources/articles/ehlers-danlos-syndrome/

  Before starting a new sport or workout or making a change in activity level, talk to your care team to create a plan that is right for you and to discuss any needed modifications, like using a brace or heart rate monitor. […] People with hEDS and POTS need to prioritize consistency in exercise, says Dr. Vinci, since lack of movement may make symptoms worse. […] There are safe ways to exercise with this condition that can actually help you manage and reduce symptoms, says Dr. Vinci.

• #21 Ehlers-Danlos Syndrome | UW Orthopaedic Surgery and Sports Medicine

  https://orthop.washington.edu/patient-care/articles/arthritis/ehlers-danlos-syndrome.html

  Learning how to protect your joints will help prevent further injury, reduce pain, conserve energy and enable you to stay as active as possible. Recognize activities that cause joint pain and find less painful ways to move and perform tasks. […] Avoid activities that cause you to overextend or „lock” your joints. Frequent over extension of the joints may cause chronic „traumatic” arthritis. For example, avoid leaning on or pushing off with the palms of your hands. These movements cause fingers to hyperextend. […] Prevent slips and falls at home by keeping walkways, entrances and exits clear of toys and other objects. Don’t use scatter rugs and avoid using slippery floor polish. Toddlers and young children should be encouraged to wear knee pads to protect their knees if they do fall. […] Consider using self-help devices such as long-handled combs and reachers if reaching or stretching puts your joints at risk for injury or dislocation. Most devices can be found in hardware or variety stores, pharmacies or medical supply shops.

• #22 Ehlers-Danlos Syndrome | UW Orthopaedic Surgery and Sports Medicine

  https://orthop.washington.edu/patient-care/articles/arthritis/ehlers-danlos-syndrome.html

  How you store routinely used items can also make a difference. Are items within easy reach? If not, rearrange storage areas and place items at comfortable heights. If stair-climbing puts excessive strain on your knees or hips, consider placing a ramp over the steps. Duplicate items upstairs and downstairs to avoid frequent trips up and down steps. Identify other ways to make your home or work area safe and comfortable. Be creative and see what works for you. […] Joint stability may be improved through prescribed exercise programs that strengthen the muscles. But avoid weightlifting. It puts too much strain on your joints. In fact, any exercises that cause you to put pressure on locked joints should be avoided. Check with your doctor or physical therapist to learn appropriate strengthening exercises and the proper way to do them.

• #23

  https://www.chronicpainpartners.com/preventive-care-recommendations-for-patients-with-the-ehlers-danlos-syndromes/

  Any EDS patients with any type of EDS should have baseline cardiovascular evaluation to screen for aortic dilation, valvular irregularities, and other cardiac problems. […] Any EDS patients with any type of EDS should have depression and anxiety screening to catch any troubling symptoms or actions early and offer treatment. […] Any EDS patients with any type of EDS should use assistive devices such as a cane, walking stick, braces, splits to protect joints, prevent long term damage, and need for surgery; prevent or help with pain. […] Any EDS patients with any type of EDS should have baseline eye exams (including slit lamp and dilated funduscopic exams) to detect or rule out retinal detachment or fragility, scleral fragility, myopia and glaucoma, among other issues.

• #24 Ehlers-Danlos Syndrome | Cedars-Sinai

  https://www.cedars-sinai.org/health-library/diseases-and-conditions/e/ehlers-danlos-syndrome.html

  There is no cure for EDS. Care is focused on easing symptoms, such as joint pain. Your healthcare providers will also talk with you about how you can prevent future health problems. These include joint dislocation and poor wound healing. […] To help you manage EDS, your healthcare providers may advise: […] Sunscreen can help protect thin skin from the sun. Bandages or pads on elbows, knees, and other trauma prone areas may help prevent slow-healing wounds. […] Regular exercise. Being active everyday can lessen joint and muscle pain. But dont do activities that can damage or dislocate your joints. These include contact sports, weight lifting, and running. Activities such as walking and swimming are best. […] EDS is a lifelong disease. But you can take steps to prevent problems linked to EDS. Make sure you see your healthcare team for regular checkups and tests. Keep in mind that poor wound healing can delay recovery after dental and medical procedures. […] There is no cure for EDS. Care is focused on easing symptoms and preventing future health problems, such as joint dislocation.

• #25 Ehlers-Danlos Syndrome

  https://www.rwjbh.org/treatment-care/heart-and-vascular-care/diseases-conditions/ehler-s-danlos-syndrome/

  There are several treatment options for EDS. Most options would fall under making certain lifestyle changes and medications. Treatment options include lifestyle changes, medications, and medical and surgical procedures. […] Avoid contact sports. […] Exercise under the directions of your doctor. […] Use sunscreen to protect the skin. […] Avoid harsh soaps that may overdry the skin or cause allergic reactions. […] Use assistive devices to minimize pressure on your joints. […] Make and keep appointments to see your doctor for routine check-ups and follow-up tests.

• #26 Ehlers-Danlos Syndrome Symptoms & Treatment | Baptist Health

  https://www.baptisthealth.com/care-services/conditions-treatments/ehlersdanlos-syndrome

  If you have EDS, there are also preventive steps that you can take: […] Avoid physically demanding activities, including manual labor and contact sports […] Use mild, scent-free soaps and detergents […] Brush your teeth with soft-bristled toothbrushes […] Wear padded clothing to reduce skin abrasions […] Apply sunblock to protect your skin while outdoors […] Take daily vitamins with calcium to enhance bone strength.

• #27 Ehlers-Danlos Syndrome + Natural Ways to Help Symptoms – Dr. Axe

  https://draxe.com/health/ehlers-danlos-syndrome/

  For people with most forms of EDS, injury, invasive procedures such as surgery, and traumatic physical experiences such as childbirth can be dangerous. […] EDS carries many risks for the health and strength of your skin. You can help prevent skin breakage, protect it from damage and potentially speed wound healing by doing the following: Use sunscreen daily, Wear protective bandages on exposed skin, Avoid soap, body wash and body lotions with harsh chemicals that may dry out the skin or cause allergic reactions. […] Many people with EDS have more than just physical symptoms. The syndromes can be very challenging emotionally and socially, and are associated with depression, anxiety, fear, trouble sleeping, guilt, social avoidance, stigma, eating disorders, alcohol and tobacco misuse, neurodevelopmental disorders and other difficult experiences.

• #28 Ehlers-Danlos Syndrome: Tests, Treatment, and Prognosis

  https://www.verywellhealth.com/ehlers-danlos-syndrome-overview-4782662

  The goals of treatment for Ehlers-Danlos syndrome include preventing dangerous complications and protecting the joints, skin, and other body tissues from injury. Treatment will be specific to the type of EDS and the symptoms experienced. […] Individuals with vascular EDS require very close follow-up and avoidance of trauma (including endovascular procedures as much as possible). One small study found that a drug called celiprolol significantly reduced vascular rupture over a 47-month period. […] Because dislocated joints and other joint injuries are common in people with EDS, your healthcare provider will recommend protecting joints by avoiding heavy lifting, contact sports, and high-impact exercise. Your healthcare provider may also recommend assistive devices like a wheelchair or scooter to protect your joints and help you get around, or braces to stabilize joints. […] To protect your skin, your healthcare provider may recommend wearing sunscreen when outdoors and using a mild soap when washing or bathing. A vitamin C supplement can reduce bruising.

• #29 Ehlers-Danlos Syndrome | UW Orthopaedic Surgery and Sports Medicine

  https://orthop.washington.edu/patient-care/articles/arthritis/ehlers-danlos-syndrome.html

  People with EDS may need surgery to correct fractures and dislocated joints. If you are scheduled for any type of surgery, be sure to tell the surgeons that you have Ehlers-Danlos syndrome so that surgeons may choose to use staples or tape (rather than stitches) to close wounds. Surgeons should also be alerted to any vascular or bleeding problems. […] Vitamin C (ascorbic acid) may or may not be effective in reducing the severity of symptoms for some people with EDS VI and possibly other types. Be sure to check with your doctor before taking supplemental doses of vitamin C. […] Premature aging due to sun exposure is a risk for many people with Ehlers-Danlos syndrome. When out-of-doors during peak daylight hours, use a sunscreen with a protection factor of 15 or above and wear long sleeves, long pants and a wide brimmed hat.

• #30 Ehlers-Danlos syndromes: Overview of the management – UpToDate

  https://www.uptodate.com/contents/ehlers-danlos-syndromes-overview-of-the-management/print

  Ehlers-Danlos syndrome (EDS) is the term used for a group of genetic disorders of connective tissue that are characterized by skin hyperextensibility, joint hypermobility, and/or tissue fragility. There are no medical treatments that can reverse or „cure” EDS. Therefore, management of EDS emphasizes patient and clinician education for the prevention and early recognition of injuries and complications. […] Patients with specific clinical manifestations may benefit from targeted interventions (eg, treatment of diffuse musculoskeletal pain). In addition, patients with certain forms of EDS require monitoring for potential complications (eg, arterial and valvular heart disease).

• #31

  https://www.healio.com/news/rheumatology/20220215/it-can-be-really-bad-vascular-ehlersdanlos-syndrome-treatment-options-remain-limited

  Ehlers-Danlos syndrome can be a devastating disease in patients who are severely affected a situation made worse by the current scarcity of treatment options. […] The FDA in December granted orphan drug designation to enzastaurin (AR101, Aytu Biopharma) for the treatment of Ehlers-Danlos syndrome. Aytu Biopharma is undertaking the PREVEnt trial to study the effectiveness of enzastaurin in preventing cardiac or arterial events in patients with vascular Ehlers-Danlos syndrome confirmed to have COL3A1 gene mutations. […] There are no treatment options currently for vascular Ehlers-Danlos syndrome. Treatment is about empowering our patients with knowledge of the underlying condition because there are certain things they should avoid, primarily anything that can lead to trauma. […] We also recommend that patients keep an emergency letter with them and wear a MedicAlert bracelet, because one of the things to avoid is any kind of instrumentation within the vessel, which can lead to more damage.

• #32 Ehlers-Danlos Syndromes – Children’s Health Issues – Merck Manual Consumer Version

  https://www.merckmanuals.com/home/children-s-health-issues/connective-tissue-disorders-in-children/ehlers-danlos-syndromes

  There is no way to cure an Ehlers-Danlos syndrome or to correct the abnormalities in the connective tissue. […] Special precautions should be taken to prevent injuries. For example, children with severe forms of Ehlers-Danlos syndromes can wear protective clothing and padding. […] Surgery requires special techniques that minimize injury and ensure that a large supply of blood is available for transfusion. […] An obstetrician (a doctor who specializes in childbirth and in caring for and treating women who are giving birth) must supervise pregnancy and delivery. […] Genetic counseling for family members is suggested.

• #33 Vascular Ehlers-Danlos Syndrome: Causes, Symptoms and Treatment

  https://my.clevelandclinic.org/health/diseases/22696-vascular-ehlers-danlos-syndrome

  Because vascular EDS is a genetic condition, theres no way to prevent it or reduce your risk of developing it. […] People with this condition should consider talking to a healthcare provider if they become pregnant or want to have children, so they can know what to expect if their child inherits this condition.

• #34

  https://www.healio.com/news/rheumatology/20220215/it-can-be-really-bad-vascular-ehlersdanlos-syndrome-treatment-options-remain-limited

  We also dont recommend patients have colonoscopies routinely because that blowing up of the colon can cause a rupture. We do recommend screening of the vessels, looking at what the arterial system looks like, but we do not currently have any kind of therapeutic and surgery can be fraught with problems. […] With surveillance, we look at changes in the arterial system or whether there has been a dissection. If somebody has abdominal trauma, you want to know what the arteries looked like before, compared with after, but there are no active therapeutics, no medication.

• #35 Surgical and Anesthetic Precautions for Hypermobile and EDS Patients – Hypermobility and Ehlers-Danlos Clinic @ The Fascia Institute

  https://hypermobilityclinic.org/surgical-and-anesthetic-precautions-for-hypermobile-and-eds-patients/

  Certain precautions can improve outcomes […] The Tulane Hypermobility and Ehlers-Danlos Syndrome (EDS) clinic team is here to help prevent surgical complications in patients with Ehlers-Danlos syndrome. […] Here are a few tips to help prevent complications when performing a surgical procedure on a patients with Ehlers-Danlos Syndrome. […] Alert your surgical team that you have Ehlers-Danlos Syndrome (EDS) […] More local anesthetic may need to be used […] Avoid tourniquets, or decrease tourniquet time if possible. […] More general anesthesia may be needed […] EDS patients tend to have a higher rate of medication allergies. […] Consider an echocardiogram prior to surgery […] Avoid extreme/prolonged patient positioning […] Consider using suture/adhesive strips combination technique for skin closure.

• #36 What drugs should you avoid with Ehlers-Danlos syndrome?

  https://www.drugs.com/medical-answers/drugs-avoid-ehlers-danlos-syndrome-3559403/

  With Ehlers-Danlos syndrome (EDS), experts recommend avoiding drugs that increase your risk of bleeding—such as anticoagulants and antiplatelet agents—because those affected with EDS are at higher risk for bruising and injury. […] The Food and Drug Administration (FDA) also recommends avoiding fluoroquinolone antibiotics if you have EDS because of an association of this class of medication with the occurrence of aneurysm. […] Patients are discouraged from taking part in activities such as sports that could result in tissue injury, and surgical procedures are avoided as much as possible.

• #37 Professor Claude Hamonet’s site – Article: How to prevent and treat Ehlers-Danlos syndrome, a medico-social emergency. A twenty years experience.

  http://claude.hamonet.free.fr/eng/eds_prevent-and-treat.htm

  „1-Prevention.” […] „Maintain physical activity for an hour a day; Kinesitherapy isometric and proprioceptive; psychomotor skills; occupational therapy; Tai Chi; Walk, jog, skate, cycle, ride a horse, take up archery. Have fun!” […] „Look for gallstones as well as for cerebral and aortic aneurysms.” […] „Avoid morphine, corticosteroids, anticoagulants, antidepressants, neuroleptics, cervical manipulations, endoscopy, lumbar or arterial punctures, orthopedic surgery.” […] „Refer a diet low in gluten.” […] […] […] „2-Proprioception.” […] „Supports engineered with shape retention memory.” […] „Foot orthotics, lumbar belts, kneepads, Orthotics hands, and fingers, compression garments developed for EDS, K-taping, compression stockings, Shoulder Support scarf, elastic bands.”

• #38 Diagnosis and treatment of the Ehlers-Danlos syndromes in China: synopsis of the first guidelines | Orphanet Journal of Rare Diseases | Full Text

  https://ojrd.biomedcentral.com/articles/10.1186/s13023-024-03121-0

  The Guidelines highly recommend a coordinated MDT approach in both diagnosing and managing EDS, alongside 29 specific recommendations addressing crucial clinical questions encountered across 23 departments. […] The collective integration of nursing care, rehabilitation, psychology, and nutrition within an MDT approach is increasingly acknowledged as crucial for optimizing patient care, especially in complex disorders requiring holistic and multidisciplinary interventions. […] It is recommended to implement home adaptations and various preventive strategies, including gradual postural changes, to minimize the risk of falls at home. […] Rehabilitation for patients with EDS typically involves long-term participation. […] Psychological interventions help manage chronic pain, a frequently reported challenge impacting daily lives. […] The complexity necessitates individualized nutritional care plans created by nutrition experts.

• #39 Treating Hypermobile Ehlers-Danlos Syndrome with Lifestyle Modifications: Alpenglow Pain & Wellness: Board Certified Interventional Pain Management Physicians

  https://www.alpenglowpain.com/blog/treating-hypermobile-ehlers-danlos-syndrome-with-lifestyle-modifications

  Since your EDS puts you at higher risk for chronic pain, it’s important to develop good habits around posture. […] You might also need to practice relaxing the muscles in your jaw, or change the way you carry your bag so you spare your upper back and shoulders. […] Life with EDS has a mental health and energy management component, as well as a physical pain management and injury prevention aspect. […] You need to realize that your energy levels can fluctuate from day to day, so your plans may need to be more flexible than usual. […] If you struggle with insomnia and sleep habits, improved sleep hygiene and bedtime routines may help you rest better through the night, more effectively recharging your energy for the next day. […] Remain aware of your mood and your emotional and mental health.

• #40 Treatment of Joint Hypermobility Syndrome, Including Ehlers-Danlos Syndrome, with Hackett-Hemwall Prolotherapy – Journal of Prolotherapy

  https://journalofprolotherapy.com/treatment-of-joint-hypermobility-syndrome-including-ehlers-danlos-syndrome-with-hackett-hemwall-prolotherapy/

  Prolotherapy offers great hope for those with symptoms from generalized hypermobility because it is designed to successfully treat the ligament and tissue laxity that accompanies JHS and EDS. […] Prolotherapy could contribute to the treatment of hypermobility disorders also by preventing the development of precocious osteoarthritis. […] While the primary author has twenty years experience treating JHS and EDS musculoskeletal symptoms with Prolotherapy, future studies will need to be conducted to best document the exact role Prolotherapy has in the treatment of the musculoskeletal symptoms and hypermobility of JHS and EDS and if it can prevent future joint degeneration in these individuals. […] Prolotherapy has a long history of success treating ligament injuries, including patients with joint hypermobility.

• #41 The Natural Approach to Treat Ehlers-Danlos Syndrome –

  https://caringmedical.com/home/conditions/natural-approach-treat-ehlers-danlos-syndrome/

  Prolotherapy needs to be started. It is the only treatment designed to stimulate the repair of all the injured structures, not only in the primary joint affected but also in the adjacent joints. […] Prolotherapy initiates the normal wound healing cascade to start the ligament and joint repair process. […] Prolotherapy treatments are continued until a person is back to full activities, with zero or minimal symptoms, and the joint stabilized. […] Caring Medical desires to get to the root cause of the EDS symptoms, not just manage them. […] While there are times that a patient will need some hormone to increase blood pressure affected by POTS, Caring Medical practitioners use a holistic natural approach to healing as much as possible. […] Joint instability can be objectively measured and treatment efficacy validated. These are key components of the Prolotherapy regimen at Caring Medical.

• #42 Treatment of Joint Hypermobility Syndrome, Including Ehlers-Danlos Syndrome, with Hackett-Hemwall Prolotherapy – Journal of Prolotherapy

  https://journalofprolotherapy.com/treatment-of-joint-hypermobility-syndrome-including-ehlers-danlos-syndrome-with-hackett-hemwall-prolotherapy/

  Some of the rationale for using Prolotherapy for patients with EDS and JHS include that it has a high safety record, is comprehensive (all or most joints can be treated at each visit), is an outpatient procedure, is cost effective (compared to surgery), pain relief is often quick, and it provides joint stabilization. […] Prolotherapy could also contribute to the treatment of hypermobility disorders by preventing the development of precocious osteoarthritis.

• #43 Professor Claude Hamonet’s site – Article: How to prevent and treat Ehlers-Danlos syndrome, a medico-social emergency. A twenty years experience.

  http://claude.hamonet.free.fr/eng/eds_prevent-and-treat.htm

  „Orthotics walk, molded seats, rest orthosis, correction of retractions of the lower limbs.” […] „Buccal gutters, prisms correcting diplopia.” […] […] […] „3-Oxygenation of tissues (brain).” […] „Intermittent oxygen therapy, several times a day. 1-5 liter/min. Very active on fatigue, headaches, shortness of breath.” […] […] […] „4-Treatment of pain.” […] „Local injection of anesthetics such as lidocaine for tendinous and muscular pain points, gums, vagina.” […] „Transcutaneous delivery of anesthetics and anti-inflammatory drugs, TENS, heat treatment, cryotherapy at very low temperatures, massage, stretching, pressotherapy for lymphedema.” […] […] […] „6-Other drugs.” […] „Vitamin D 3,000 IU a day. Melatonin 4 to 8 mg. Solifenacin for pollakiuria. self-catheterization for urinary retention, anti-reflux treatment, and constipation prevention.” […] […] […] „8-Supports to Independence program: Walker, electric wheelchair, assistance dog, human assistance, adaptations of the environment.”

• #44 Ehlers-Danlos Syndrome (EDS) | Manhattan Pain Medicine, PLLC

  https://www.manhattanpainmedicine.com/conditions/ehlers-danlos-syndrome-eds/

  Preventative steps can help manage symptoms and improve the quality of life for individuals with Ehlers-Danlos Syndrome (EDS). Important measures include: […] Genetic Counseling: Understanding familial risk and inheritance patterns aids in family planning and comprehending the implications of EDS. […] Regular Physical Activity: Strengthens muscles around joints, reducing the risk of dislocations and injuries. […] Skin Protection: Avoiding trauma to prevent skin complications. […] Healthy Lifestyle: Balanced diet, hydration, and no smoking support overall health and alleviate symptoms. […] Gentle Physical Therapy: Low-impact exercises enhance joint function and lower injury risks. […] Regular Monitoring: Early symptom detection through routine check-ups is crucial. […] Diet and Nutrition: Balanced diet supports overall health and may reduce gastrointestinal issues associated with EDS.

• #45 Ehlers-Danlos Syndrome 101 – Hypermobility and Ehlers-Danlos Clinic @ The Fascia Institute

  https://hypermobilityclinic.org/ehlers-danlos-syndrome-101/

  Early recognition of EDS in these patients can lead to the use of prophylactic braces or pads to enhance joint stability and potentially minimize long-term joint damage. […] EDS patients should be counseled on the importance of bracing, muscle strengthening, and low-impact exercise to enhance joint stability and minimize long-term damage.

• #46 Vascular Ehlers-Danlos syndrome in children: evaluating the importance of diagnosis and follow-up during childhood | European Journal of Human Genetics

  https://www.nature.com/articles/s41431-024-01773-x

  Vascular Ehlers-Danlos syndrome (vEDS) is a rare inherited connective tissue disorder predominantly caused by pathogenic COL3A1 variants. […] Our findings emphasise the importance of offering genetic testing in childhood when there is a positive family history of vEDS and/or features suggestive of a potential inherited connective tissue disorder. Diagnosis in childhood allows for follow-up surveillance and informed multi-disciplinary management, in addition to genetic counselling and patient-led management including lifestyle modification. […] Findings from this cohort emphasise the importance of genetic testing in childhood when there is a positive family history of vEDS and/or features suggestive of a potential inherited connective tissue disorder. Diagnosis in childhood allows for management and follow-up, in addition to counselling for both children and their family. This can have a positive impact on disease course through factors including: (i) awareness of vEDS diagnosis by health care professionals, (ii) lifestyle modification, and (iii) potential influence of medication and surveillance.

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