Materiały źródłowe

• #1 Nursing considerations for people with Marfan syndrome. | Nursing Times

  https://www.nursingtimes.net/archive/nursing-considerations-for-people-with-marfan-syndrome-22-03-2005/

  Marfan syndrome affects numerous body systems, nursing care depends largely on the presenting condition. […] Following cardiac or aortic surgery, the patient will usually be transferred to intensive care, where nursing care will focus on haemodynamic monitoring and organ support. […] One of the main aims of nursing care of people with Marfan syndrome is to provide education and support for both them and their loved ones. […] Nurses can provide emotional support, which will be vital during any hospital admissions, and assist with education on subjects such as family planning and genetic counselling, fitness and exercise, diet and nutrition, and any special precautions or follow-up treatment and examinations required. […] Nurses can help them to accept their condition by providing support, understanding and up-to-date information – particularly since there are often rapid improvements in the treatment available.

• #1

  https://www.nhs.uk/conditions/marfan-syndrome/treatment/

  There’s currently no cure for Marfan syndrome. Treatment focuses on managing the symptoms and reducing the risk of complications. […] You’ll usually be assigned a doctor to co-ordinate your treatment programme and ensure every aspect of the syndrome is closely monitored and, if necessary, treated. […] Physiotherapy uses physical methods such as exercise, massage and manipulation to promote healing and wellbeing. […] If skeletal problems are making it difficult for you to get around, physiotherapy may help make moving easier and more comfortable. […] Marfan syndrome can cause serious heart problems, which can be fatal. This means it’s important that your heart is treated as a priority. […] You’ll need to have regular check-ups with a cardiologist, who’ll be able to monitor your heart.

• #1 Nursing Care Plan (NCP) for Marfan Syndrome | Free NURSING.com Courses

  https://nursing.com/lesson/nursing-care-plan-for-marfan-syndrome

  Marfan Syndrome Nursing Care Plan […] The primary goal is to enhance the patients overall quality of life by managing symptoms, preventing complications, and promoting physical and emotional well-being. […] Achieve and maintain cardiovascular health by managing aortic dilation and reducing the risk of life-threatening complications such as aortic dissection or rupture. […] Preserve joint function and mobility through a combination of medical management, physical therapy, and lifestyle modifications to address musculoskeletal manifestations. […] Ensure normal growth and development in pediatric patients through early intervention, monitoring, and appropriate medical management to address potential complications related to bone overgrowth and skeletal abnormalities. […] Address psychosocial aspects by providing counseling and support to individuals and families, helping them cope with the emotional and social challenges associated with living with Marfan Syndrome.

• #1 Marfan Syndrome: 7 Ways to Help Manage Symptoms – Dr. Axe

  https://draxe.com/health/marfan-syndrome/

  Marfan syndrome is a genetic disorder that affects the body’s connective tissue. People with Marfan syndrome can live a normal lifespan with regular monitoring and some conventional treatments. By also taking advantage of natural strategies for improving health and wellbeing, people with Marfan syndrome can also often have a good quality of life. […] Heart problems are the most significant health risk to people with Marfan syndrome. By taking care to prevent high blood pressure and get regular monitoring for your heart and aorta, you can lower your chance of a deadly aortic rupture. […] If you have Marfan syndrome and wish to learn more about preventing the disease in your children, you can speak with a genetic counselor about your options. […] People with Marfan syndrome should avoid strenuous activities, such as weightlifting and intense aerobic sports. […] With proper monitoring and lifestyle changes, people with Marfan syndrome often have a normal lifespan.

• #1 Marfan Syndrome Nursing Diagnosis & Care Plan – NurseStudy.Net

  https://nursestudy.net/marfan-syndrome-nursing-diagnosis/

  Monitor vital signs regularly. Rationale: Detects early signs of cardiovascular compromise. […] Teach proper body mechanics. Rationale: Prevents injury and reduces strain. […] Provide education about the condition. Rationale: Increases understanding and control. […] Monitor nutritional intake. Rationale: Ensures adequate nutrition.

• #1

  https://www.nhs.uk/conditions/marfan-syndrome/treatment/

  People with Marfan syndrome are often prescribed a type of medicine called beta blockers to help prevent damage to their heart. […] If your cardiologist feels it’s necessary, you may need to have heart surgery to reduce your risk of developing life-threatening complications. […] If you have been diagnosed with Marfan syndrome, you may be referred to an ophthalmologist, who’ll assess your eyes and vision. […] Speak to your GP if you or your child are finding the diagnosis difficult to cope with. […] Keeping fit through regular moderate exercise and eating a balanced diet will help improve your overall health. […] Your cardiologist will be able to give you more advice about which sports and physical activities are suitable for you.

• #1 Nursing Care Plan (NCP) for Marfan Syndrome | Free NURSING.com Courses

  https://nursing.com/lesson/nursing-care-plan-for-marfan-syndrome

  Implement a regular monitoring schedule for cardiovascular health, including echocardiograms and other relevant tests. Educate the patient on the signs and symptoms of aortic dissection and the importance of seeking immediate medical attention if such symptoms arise. […] Assess the effectiveness of cardiovascular interventions by monitoring parameters such as aortic size and function through regular echocardiograms. Evaluate whether prescribed medications are effectively managing cardiovascular risks. […] Evaluate the impact of orthopedic interventions on musculoskeletal health, assessing improvements in mobility, reduction in joint pain, and any changes in the progression of skeletal deformities. […] Measure the patients understanding of Marfan Syndrome, its complications, and the importance of adhering to the prescribed treatment plan. Assess the patients ability to recognize and respond to symptoms of potential complications.

• #1 Marfan Syndrome – Living With | NHLBI, NIH

  https://www.nhlbi.nih.gov/health/marfan-syndrome/living-with

  Regular imaging tests check for problems with your heart valves and measure your aorta. […] People who have Marfan syndrome may need more than one heart or blood vessel surgery over time. […] If you have Marfan syndrome, you are at risk for a life-threatening problem in an important blood vessel in your chest called the aorta. […] If your aorta is weaker or larger than normal, it is important to know symptoms of a dissection, or rupture. […] Your provider may recommend you avoid certain medicines and activities. […] Living with Marfan syndrome may cause fear, anxiety, depression, and stress. […] Many women who have Marfan syndrome have safe and healthy pregnancies and deliveries. However, there are some added risks during pregnancy and delivery. The most serious risk is aortic dissection due to extra strain on the heart. […] If you are thinking about getting pregnant, talk with an obstetrician, a doctor who cares for pregnant women.

• #1

  https://www.sgh.com.sg/patient-care/conditions-treatments/marfan-syndrome

  Marfan syndrome is a genetic disorder of the connective tissue, in particularly affecting the heart, blood vessels, skeleton and eyes. […] While it is not possible to cure Marfan syndrome, much can be done to make sure you/your child has the best possible outcome. […] The multidisciplinary medical team looking after you/your child will be able to address specific medical concerns and routine Marfan syndrome-related health issues. […] Management measures may include: Regular echocardiograms to assess the heart and width of the aorta. Medications and/or surgery may be required if the width of the aorta gets too wide. […] Maintaining good dental and skin hygiene, which is important to reduce the risk of infection of the heart valves. […] Antibiotic prophylaxis may be required before surgery and dental procedures in some cases. Please discuss with your doctor for the latest update on antibiotic prophylaxis.

• #1 Support for Marfan Syndrome | NYU Langone Health

  https://nyulangone.org/conditions/marfan-syndrome/support

  Marfan syndrome is a lifelong condition, and doctors at NYU Langone provide ongoing support to help people manage the symptoms and improve their quality of life. […] You may need specialized care to prevent or slow serious medical conditions that can be associated with Marfan syndrome. Its important to see your doctor or doctors regularly for checkups and imaging tests. […] In addition to medications and surgery, your doctor may recommend lifestyle changes to support the organs and bones that can be affected by Marfan syndrome. […] People with Marfan syndrome may need rehabilitation after heart surgery to help them transition from the hospital to home. […] Your NYU Langone doctor may refer you to a psychologist or social worker to address the emotional effects of Marfan syndrome, which can include anxiety and depression. Your doctor can also recommend support groups that can help you cope.

• #1

  https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=uf7509

  Marfan syndrome may cause heart or aorta problems, a curved spine, vision trouble, and pain if the nerves are affected. […] Doctors usually can treat the problems caused by Marfan syndrome. For example, you may take medicine to lower your heart rate and blood pressure, which reduces stress on the aorta. […] Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse advice line (811 in most provinces and territories) if you are having problems. […] Take your medicines exactly as prescribed. Call your doctor or nurse advice line if you think you are having a problem with your medicine. […] Talk to your doctor before starting an exercise program or playing team sports. Contact sports can be dangerous because your blood vessels and joints are weaker than normal. […] Call your doctor or nurse advice line now or seek immediate medical care if you have upper back or belly pain. […] Watch closely for changes in your health, and be sure to contact your doctor or nurse advice line if you have questions about Marfan syndrome.

• #1

  https://www.sgh.com.sg/patient-care/conditions-treatments/marfan-syndrome

  Careful monitoring of the skeleton to detect problems with the spine or chest bone. […] Regular eye examinations to monitor for myopia and lens dislocations. […] There are also important lifestyle considerations for an individual with Marfan syndrome: Ensure a balanced diet, engage in low-intensity exercise and avoid smoking. These measures are also good for general health. […] Avoid heavy weightlifting and contact sports. Discuss with your doctor about recommendations for exercise and activities. […] With proper management of the cardiovascular manifestations, the life expectancy of someone with Marfan syndrome approximates that of the general population. […] Pregnant women with Marfan syndrome may be at high risk of obstetric and cardiac complications due to increased stress of the aortic wall especially during delivery. Please consult your doctor for preconception care and counselling.

• #1 Nursing Care Plan (NCP) for Marfan Syndrome | Free NURSING.com Courses

  https://nursing.com/lesson/nursing-care-plan-for-marfan-syndrome

  Facilitate a multidisciplinary approach involving healthcare providers from various specialties, including cardiology, ophthalmology, and orthopedics, to address the diverse needs of individuals with Marfan Syndrome. […] Administer medications as prescribed, focusing on medications that may help manage cardiovascular complications or alleviate specific symptoms associated with Marfan Syndrome. […] Provide comprehensive education to the patient and their family regarding the nature of Marfan Syndrome, potential complications, and the importance of adherence to treatment plans. Emphasize the need for regular follow-up appointments. […] Coordinate with orthopedic specialists to implement interventions such as bracing or surgical procedures to address musculoskeletal issues, scoliosis, or other orthopedic complications.

• #1 Marfan Syndrome – Living With | NHLBI, NIH

  https://www.nhlbi.nih.gov/health/marfan-syndrome/living-with

  If you have been diagnosed with Marfan syndrome, it is important to know how to manage your disease, what other health problems or complications you may have as a result of this condition, when to seek medical help, and how to plan ahead if you are thinking of becoming pregnant. […] You can help manage Marfan syndrome by following your healthcare providers recommendations and getting regular dental checkups. […] People who have Marfan syndrome often have teeth, gum, or jaw problems that require regular care. […] You will likely need to take antibiotics before dental procedures to help prevent infection. […] Your provider may recommend tests to monitor your condition. […] Annual checkups with a bone specialist or orthopedist can monitor any changes in your spine and breastbone. […] Regular eye exams with an eye specialist or ophthalmologist find and treat eye problems early.

• #1 Marfan Syndrome: Symptoms, Causes & Treatment

  https://my.clevelandclinic.org/health/diseases/17209-marfan-syndrome

  Youll need routine medical appointments to monitor your heart and blood vessels in particular, the size of your aorta, eyes, and skeletal system. […] Intense physical activity can strain your aorta and other connective tissues impacted by MFS. Because of this, youll work closely with a physical therapist to find exercises and sports that are safe for you. […] The goal of heart surgery for Marfan syndrome is to prevent your aorta from dissecting or rupturing and to treat valve problems. […] If you have Marfan syndrome, you can expect a lot of medical appointments and needing to have a thorough understanding of your body. […] Life with Marfan syndrome may feel like spinning through a revolving door of medical appointments, treatments and lifestyle changes. But all those check-ins can help prevent complications of Marfan syndrome so you can live the healthiest life possible. Your healthcare team will be by your side through it all.

• #1 Genetics of Marfan Syndrome Treatment & Management: Medical Care, Surgical Care, Consultations

  https://emedicine.medscape.com/article/946315-treatment

  Competitive and contact sports are potentially dangerous because of underlying aortic weakness and dilatation, valvular insufficiency, ocular abnormalities, and skeletal problems. Patients should avoid blows to the head (eg, in boxing or high diving) and should protect themselves against blows to the globe (in racquet sports) by wearing cushioned spectacles. […] To protect against pneumothorax, patients should avoid the rapid decompression associated with quick ascents in elevators, scuba diving, and flying in unpressurized aircraft. Playing an instrument that requires breathing against resistance, such as a brass instrument, is not recommended. […] Patients should avoid activities involving isometric work such as weightlifting, climbing steep inclines, gymnastics, and performing pull-ups. These exercises cause excessive elevations of systolic blood pressure and can lead to sudden death. […] Nonstrenuous activities and sports (eg, golf, walking, fishing) are recommended. Appropriate exercise is physically and emotionally beneficial.

• #1 Nursing considerations for people with Marfan syndrome. | Nursing Times

  https://www.nursingtimes.net/archive/nursing-considerations-for-people-with-marfan-syndrome-22-03-2005/

  Nurses can arrange such peer support, as well as providing the latest information on treatments and prognosis, which may help them to adjust and become more accepting of their condition and its impact on their lives. […] Nurses can help parents to adjust to their fears and allow their children to become as independent as possible. […] It is important for people with Marfan syndrome to remain as active as possible, since exercise helps to improve muscle tone and cardiovascular function. […] People with Marfan syndrome are recommended to have a balanced, nutritious, healthy diet, with restrictions on salt, cholesterol and animal fats. […] Nurses with specialist knowledge can explain to people with Marfan syndrome and their families why these regular examinations are necessary and what they involve, as a greater understanding of the procedures and potential benefits will promote acceptance.

• #1 Marfan Syndrome | Boston Children’s Hospital

  https://www.childrenshospital.org/conditions/marfan-syndrome

  Boston Children’s Center for Cardiovascular Genetics cares for patients and families affected by Marfan syndrome and other genetic disorders. […] Our team offers complete long-term care for the cardiovascular conditions associated with Marfan syndrome. […] Marfan syndrome can lead to many eye problems, such as a dislocated lens (ectopia lentis), nearsightedness (myopia), early glaucoma, early cataracts, or a detached retina. […] People with Marfan syndrome can lead normal lives. Treatments for Marfan syndrome are continually being refined, with long-term outcomes constantly improving.

• #1 Non-cardiac manifestations of Marfan syndrome – Child- Annals of Cardiothoracic Surgery

  https://www.annalscts.com/article/view/16416/html

  Holistic care should be offered by one doctor who oversees the patients welfare. This should be a paediatrician, paediatric cardiologist, or general practitioner in the case of an affected child. Thereafter, the physician in charge of the most seriously affected system should be aware that other systems need to be managed through a referral network. […] Early recognition can aid management, and genetic counselling can be provided to the parents. […] Once a new mutation in the FBN1 gene is detected, and parents checked for the same mutation, the majority of parents can be reassured that their child has a spontaneous mutation, as occurs in 25% of cases of MFS. […] Regular checks of visual acuity and refractive error should be carried out in childhood to detect abnormalities. It is advisable that children refrain from sports with excessive head contact or deceleration such as boxing or bungee jumping.

• #1 Marfan Syndrome Treatment – UChicago Medicine

  https://www.uchicagomedicine.org/conditions-services/heart-vascular/marfan-syndrome/treatments

  Surgery or nonsurgical interventional care may be used to repair the valve to prevent leakage. […] Surgery or nonsurgical interventional care can be used to repair the valve. […] In some cases, surgery or nonsurgical options may be necessary to repair other cardiac structures, such as the septum or the coronary arteries. […] Surgery may be necessary to correct eye problems, such as dislocated lenses, cataracts and glaucoma. […] Surgery may be necessary to correct the curvature of the spine. […] Osteoarthritis, degenerative joint disease with damages cartilage, can cause chronic pain that can require with nonsurgical or surgical procedures to relieve pain and improve mobility.

• #1 Nursing Care Plan (NCP) for Marfan Syndrome | Free NURSING.com Courses

  https://nursing.com/lesson/nursing-care-plan-for-marfan-syndrome

  Evaluate the patients psychosocial well-being by assessing their coping mechanisms, emotional health, and quality of life. Address any concerns related to body image, mental health, or social interactions. […] Assess the patients overall functional status by considering improvements or stability in daily activities, school/work performance, and participation in social or recreational activities. Evaluate the impact of interventions on the patients ability to lead a fulfilling life.

• #1 Marfan Syndrome Program | Children’s Healthcare of Atlanta

  https://www.choa.org/medical-services/heart-center/marfan-syndrome

  At the Childrens Healthcare of Atlanta Heart Center, our team of pediatric cardiologists, cardiothoracic surgeons and genetic counselors specializes in the diagnosis, treatment and management of cardiovascular conditions in infants, children and teens with Marfan syndrome. […] Marfan syndrome is a disorder that affects the bodys connective tissues and makes them weaker than they should be. […] At the Childrens Heart Center, we understand that children with Marfan syndrome need high-quality, specialized cardiovascular care, and we bring together a team of pediatric cardiologists, cardiothoracic surgeons, cardiac advanced practice providers and genetic counselors. […] The pediatric cardiologists at the Childrens Heart Center perform full physical exams and evaluations to diagnose Marfan syndrome and associated cardiovascular conditions.

• #1 Marfan Syndrome in Children | Marfan Trust

  https://www.marfantrust.org/resources/47-marfan-syndrome-in-children

  Manage children’s care via a paediatrician. To receive the right treatment, a child with Marfan syndrome should be seen at regular intervals by a paediatrician who will provide an overview and arrange referrals to other specialists where necessary. The heart should be monitored by echocardiograms at birth and annually thereafter to determine the need for and timing of preventive heart treatment. Height should be measured annually and skeletal problems such as excessive height, scoliosis, concave or protruding chest bone, loose joints, and flat feet should be reported to a paediatrician for treatment. Physical Exercise will need to be taken into consideration. As for adults, the Marfan Trust and most doctors will advise against competitive and strenuous sports and exercise for children with Marfan syndrome, as well as lifting heavy objects and sudden extreme bursts of energy. Professional psychological counselling may also help improve a young person’s self-image. […] Teachers and school staff should be made aware of your child’s condition and parents should be sensitive to these issues and ensure they have strategies to address these areas, such as learning to be comfortable with the diagnosis, identifying a young person’s areas of strength.

• #1 Marfan Syndrome (for Parents) | Nemours KidsHealth

  https://kidshealth.org/en/parents/marfan.html

  Keep in touch with teachers and the nurse at school. This way, they can find ways for your child to be included even if they can’t compete (for example, instead of playing in the soccer game, your child can be the scorekeeper). They also need to know the signs of possible problems so they can respond quickly.

• #1 Marfan Syndrome Program | Children’s Healthcare of Atlanta

  https://www.choa.org/medical-services/heart-center/marfan-syndrome

  Marfan syndrome treatment is personalized based on each patients unique needs, and typically depends on your childs age, symptoms and the severity of their condition. […] Your childs pediatric cardiologist may prescribe medications such as angiotensin receptor blockers or beta blockers to help lower blood pressure or slow the growth of aneurysms. […] If your child is diagnosed with a cardiovascular condition associated with Marfan syndrome, surgery may be needed in some cases. […] While there is no cure for Marfan syndrome, due to breakthroughs and advancements in medical and surgical care, children with Marfan syndrome are often able to live normal lives. Most patients will need to see a pediatric cardiologist each year to monitor their cardiovascular health. […] Additionally, given our experience with Marfan syndrome patients, we can assist with referrals to specialists who are familiar with other complications.

• #1 Marfan syndrome – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/marfan-syndrome/diagnosis-treatment/drc-20350787

  Our caring team of Mayo Clinic experts can help you with your Marfan syndrome-related health concerns […] If you are diagnosed with Marfan syndrome, you’ll need to have regular imaging tests to monitor the size and condition of your aorta. […] While there is no cure for Marfan syndrome, treatment focuses on preventing the various complications of the disease. […] Doctors often prescribe blood pressure lowering drugs to help prevent the aorta from enlarging and to reduce the risk of dissection and rupture. […] Working together, parents, teachers and medical professionals can provide children with both emotional support and practical solutions for some of the more distressing aspects of the disease. […] People who have Marfan syndrome often find it helpful to talk with others facing the similar challenges. The Marfan Foundation provides a variety of support services online. […] Marfan syndrome can affect many different parts of your body, so you may need to see a variety of medical specialists, such as a cardiologist, a doctor who specializes in heart and blood vessel disorders.

• #1 People with Marfan Syndrome Benefit from Care at a Certified Center » Department of Surgery » College of Medicine » University of Florida

  https://surgery.med.ufl.edu/2020/07/20/people-with-marfan-syndrome-benefit-from-care-at-a-certified-center/

  UF Health also offers preconception counseling is available for women with Marfan syndrome, because their risk of aortic dissection and other cardiovascular problems is high during pregnancy. […] The Marfan treatment experts at UF Health are actively involved with the Marfan Foundation. They present symposia that educate patients and families, and they help raise funding for research. […] Clinicians can trust UF Health to provide high-quality care for their patients who show signs of Marfan syndrome or a related disorder.

• #1 Marfan Syndrome and Other Connective Tissue Disorders | Duke Health

  https://www.dukehealth.org/treatments/heart/marfan-syndrome-and-connective-tissue-disorders

  An early diagnosis and comprehensive, expert medical care can be lifesaving for people with connective tissue disorders (CTDs) like Marfan syndrome. […] It is important to seek care from a team of providers who specialize in treating connective tissue disorders. […] Our Marfan/CTD care team is experienced in treating both children and adults. […] Your care team will create a customized, lifelong monitoring plan for you. […] You may undergo routine imaging scans and attend regular doctor appointments to reduce the risk of potential complications. […] In addition to maintaining healthy habits like following a nutritious diet and getting enough sleep, your doctor may recommend that you stick to low-impact and low-intensity exercise options like walking or swimming. […] If it is determined that your aorta is enlarged or is at risk of enlargement, you may be prescribed medications that lower blood pressure to reduce your risk of aortic aneurysm and dissection.

• #1 Non-cardiac manifestations of Marfan syndrome – Child- Annals of Cardiothoracic Surgery

  https://www.annalscts.com/article/view/16416/html

  Patients should refrain from playing any sport which causes high impact loading of the cervical spine, in particular, diving, weight lifting and rugby or football. […] Close involvement with rheumatologists and orthopedic surgeons may be indicated to manage painful joint hypermobility and complications in early to mid-life, and degenerative joint disease in later years. […] The Alexander method of correct posture, as well as stretching exercises, are helpful in managing joint pain. […] Medication, including non-steroidal anti-inflammatory medicines, should be prescribed on a regular basis, together with Omeprazole. […] Moderate sporting activities on a regular basis, which are suited to the long lean frame, such as cycling, basketball, badminton, and swimming, are recommended. […] These patients should be counselled to minimize additional risk factors such as constipation, straining at stool, chronic cough, heavy lifting and increased body weight. Pelvic floor exercises should be encouraged. […] Patients with MFS have delayed wound healing due to abnormal fibrillin production, and their vasculature is fragile, which can lead to increased blood loss.

• #1 Marfan Syndrome

  https://lakecountyin.gov/departments/health/nursing-clinic/diseases-and-conditions/genetic-disorders/marfan-syndrome

  Routine Check-Ups: Regular visits to a multidisciplinary team, including cardiologists, ophthalmologists, and orthopedic specialists. […] Managing Marfan Syndrome presents several challenges: […] Continuous monitoring and preventive measures are necessary to reduce the risk of serious complications. […] Addressing the psychological and emotional impact of living with a chronic, visible condition.

• #1 Marfan syndrome | Better Health Channel

  https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/marfan-syndrome

  Marfan syndrome is a genetic disorder of the body’s connective tissue, which may affect the heart, eyes, skeleton and lungs. […] There is no cure, but the syndrome can be managed with careful monitoring, medication, surgery and lifestyle changes, including the avoidance of heavy physical activity and contact sports. […] Depending on which body parts are affected and to what degree, regular monitoring and treatment options may include: lifestyle changes, regular echocardiogram tests to monitor heart and aorta size and function, regular eye examinations and treatment, regular check-ups to monitor the skeleton and offer corrective treatment if necessary, medication, such as beta-blockers, to reduce blood pressure and relieve the strain on the cardiovascular system, measures such as a course of antibiotics to prevent infection prior to any type of surgery involving the teeth, genitals or urinary system to reduce the risk of heart valve problems, including infection (endocarditis), heart surgery, such as surgical repair of valves and aorta.

• #1 Marfan Syndrome (for Parents) | Nemours KidsHealth

  https://kidshealth.org/en/parents/marfan.html

  There’s no cure for Marfan syndrome because the gene change cannot be reversed. But most of the symptoms can be treated. It’s important for your child to go to all regular doctor’s visits for testing of the heart, eyes, and bones. This way the care team can find any problems early and start treatment right away. […] Treatments may include: limits on exercise, such as no strenuous activities and no contact sports or sports where there’s a risk of getting hit in the chest; medicines to lower blood pressure and heart rate to protect the aorta; wearing glasses or contact lenses; a back brace for scoliosis; surgery on heart valves or the aorta, if needed. […] Also, kids with Marfan syndrome should wear a medical alert device (a bracelet or necklace) that says they have the condition. […] Learning about Marfan syndrome and finding a knowledgeable medical team are important for your child’s care. Genetics follow-up is recommended to help the family understand how Marfan syndrome is passed down to children, and also to help coordinate screening and specialty visits.

• #1

  https://www.healthychildren.org/English/health-issues/conditions/heart/Pages/marfan-syndrome-keeping-kids-with-this-inherited-condition-healthy.aspx

  Some children with Marfan syndrome may need to avoid vigorous physical activity such as competitive sports, but normal play is encouraged. […] Working with your child’s doctors to monitor their health can help prevent and treat any complications. […] Every child with Marfan syndrome is different, so treatments they may need will vary. It will depend on the parts of the body that are affected. Treatments may include medications, surgery or other options to manage the condition and any complications. […] Increased medical monitoring, along with research and advances in treatments and surgeries, allow people with Marfan syndrome to live long, productive lives.

• #1 Marfan syndrome – Care at Mayo Clinic – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/marfan-syndrome/care-at-mayo-clinic/mac-20350791

  Marfan syndrome care at Mayo Clinic: The Marfan Syndrome and Thoracic Aorta Clinic at Mayo Clinic’s campus in Minnesota offers an experienced, integrated team of specialists that provide care for people of all ages with Marfan syndrome. […] Experienced staff at Mayo Clinic’s campuses in Florida and Arizona also provide care for adults with Marfan syndrome and related disorders. […] At Mayo Clinic, a multidisciplinary team of doctors trained in cardiovascular diseases, cardiac surgery, cardiac imaging, clinical genomics, ophthalmology and orthopedic surgery work together to confirm the diagnosis of Marfan syndrome, evaluate your symptoms and set up a treatment plan. […] Cardiovascular care and genetics are the most commonly used services, but you may also need care for musculoskeletal system problems, vision problems and chronic pain.

• #1 Nursing considerations for people with Marfan syndrome. | Nursing Times

  https://www.nursingtimes.net/archive/nursing-considerations-for-people-with-marfan-syndrome-22-03-2005/

  The nurses role in caring for people with Marfan syndrome is varied and depends largely upon each individuals symptoms and particular health problems. […] Apart from specialised care afforded to each affected organ, the nurses main role is to provide support and education – both for patients and their families and loved ones. […] Family planning, support and regular health reviews are essential to prospective parents, who require appropriate guidance and advice from their nurse.

• #1 Marfan Syndrome: Diagnosis, Treatment, and Steps to Take

  https://www.niams.nih.gov/health-topics/marfan-syndrome/diagnosis-treatment-and-steps-to-take

  There is no cure for Marfan syndrome; instead, doctors focus treatment to relieve symptoms and prevent additional problems or complications. Treatment depends on the area of the body affected by the syndrome and may include medications, other treatments, and surgery. […] Some people with Marfan syndrome may need surgery to correct the problems or complications that can happen. […] Health care providers who may treat Marfan syndrome include: Nurse educators, who help you understand your condition and help start treatment plans. […] Treating and living with Marfan syndrome, and its complications, is a lifelong process. However, advances in treatment make it possible for people with the disorder to have long, productive lives. […] Regular visits are important in managing Marfan syndrome and preventing complications. […] If you are thinking about getting pregnant, talk to your doctor. Planning helps doctors treat problems prior to the pregnancy to keep both the mother and baby healthy.

• #2 Marfan Syndrome: Symptoms, Causes & Treatment

  https://my.clevelandclinic.org/health/diseases/17209-marfan-syndrome

  Marfan syndrome affects the connective tissue that holds your body together. Since the syndrome affects various parts of your body, youll need a team of healthcare providers to manage it. Close monitoring and treatments can help you live a healthy life. […] Marfan syndrome can cause aortic aneurysm, aortic dissection and an enlarged heart. […] Healthcare providers typically use a set of criteria to diagnose MFS called the Ghent nosology. They may recommend many tests to help confirm the diagnosis or rule out other conditions. […] Theres no cure for Marfan syndrome. But various treatments and strategies can help manage your symptoms and prevent complications, like medications, routine monitoring, physical activity guidance, and surgery. […] Youll need a treatment plan thats specific to your health issues.

• #2 Treating kids with Marfan syndrome – UChicago Medicine

  https://www.uchicagomedicine.org/forefront/pediatrics-articles/2024/january/treating-kids-with-marfan-syndrome

  A patient may see an orthopedic surgeon who specializes in scoliosis, a general surgeon who repairs hernias and does pectus excavatum repairs, a pediatric or adult cardiovascular surgeon, neurologist, neurosurgeon, dermatologist and ophthalmologist who have expertise caring for the unique conditions of Marfan syndrome. […] Care and surveillance can be adjusted to meet the specific challenges for a given family, which is a major advantage of our program, says Earing. […] We offer real-time genetic testing in all our clinics, so we can diagnose patients early and monitor them before problems occur. […] Early diagnosis offers an opportunity to intervene with medical therapies that can slow the progression of Marfans and other genetic causes of aortic aneurysm. […] Patients may be on medications such as beta blockers or angiotensin receptor blockers to slow aortic root dilation and prevent emergent dissections, said Rachel Barsella, DNP, Advanced Practice Nurse for Chicago Adult Congenital Heart Disease Alliance.

• #2

  https://www.sgh.com.sg/patient-care/conditions-treatments/marfan-syndrome

  Marfan syndrome is a genetic disorder of the connective tissue, in particularly affecting the heart, blood vessels, skeleton and eyes. […] While it is not possible to cure Marfan syndrome, much can be done to make sure you/your child has the best possible outcome. […] The multidisciplinary medical team looking after you/your child will be able to address specific medical concerns and routine Marfan syndrome-related health issues. […] Management measures may include: Regular echocardiograms to assess the heart and width of the aorta. Medications and/or surgery may be required if the width of the aorta gets too wide. […] Maintaining good dental and skin hygiene, which is important to reduce the risk of infection of the heart valves. […] Antibiotic prophylaxis may be required before surgery and dental procedures in some cases. Please discuss with your doctor for the latest update on antibiotic prophylaxis.

• #2 Marfan Syndrome – Living With | NHLBI, NIH

  https://www.nhlbi.nih.gov/health/marfan-syndrome/living-with

  Regular imaging tests check for problems with your heart valves and measure your aorta. […] People who have Marfan syndrome may need more than one heart or blood vessel surgery over time. […] If you have Marfan syndrome, you are at risk for a life-threatening problem in an important blood vessel in your chest called the aorta. […] If your aorta is weaker or larger than normal, it is important to know symptoms of a dissection, or rupture. […] Your provider may recommend you avoid certain medicines and activities. […] Living with Marfan syndrome may cause fear, anxiety, depression, and stress. […] Many women who have Marfan syndrome have safe and healthy pregnancies and deliveries. However, there are some added risks during pregnancy and delivery. The most serious risk is aortic dissection due to extra strain on the heart. […] If you are thinking about getting pregnant, talk with an obstetrician, a doctor who cares for pregnant women.

• #2 Nursing Care Plan (NCP) for Marfan Syndrome | Free NURSING.com Courses

  https://nursing.com/lesson/nursing-care-plan-for-marfan-syndrome

  Implement a regular monitoring schedule for cardiovascular health, including echocardiograms and other relevant tests. Educate the patient on the signs and symptoms of aortic dissection and the importance of seeking immediate medical attention if such symptoms arise. […] Assess the effectiveness of cardiovascular interventions by monitoring parameters such as aortic size and function through regular echocardiograms. Evaluate whether prescribed medications are effectively managing cardiovascular risks. […] Evaluate the impact of orthopedic interventions on musculoskeletal health, assessing improvements in mobility, reduction in joint pain, and any changes in the progression of skeletal deformities. […] Measure the patients understanding of Marfan Syndrome, its complications, and the importance of adhering to the prescribed treatment plan. Assess the patients ability to recognize and respond to symptoms of potential complications.

• #2 Marfan Syndrome: Care Instructions | Kaiser Permanente

  https://healthy.kaiserpermanente.org/health-wellness/health-encyclopedia/he.marfan-syndrome-care-instructions.uf7509

  Marfan syndrome causes problems with connective tissues. […] Doctors usually can treat the problems caused by Marfan syndrome. For example, you may take medicine to lower your heart rate and blood pressure, which reduces stress on the aorta. […] Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor if you are having problems. […] Take your medicines exactly as prescribed. Call your doctor if you think you are having a problem with your medicine. […] Talk to your doctor before starting an exercise program or playing team sports. Contact sports can be dangerous because your blood vessels and joints are weaker than normal. […] Watch closely for changes in your health, and be sure to contact your doctor if: You have questions about Marfan syndrome.

• #2 Marfan syndrome | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/marfan-syndrome

  You may need to avoid competitive sports and certain recreational activities if you’re at increased risk of aortic dissection or rupture. Increases in blood pressure, common in activities such as weightlifting, place extra strain on the aorta. Less intense activities such as brisk walking, bowling, doubles tennis or golf are generally safer.

• #2

  https://www.sgh.com.sg/patient-care/conditions-treatments/marfan-syndrome

  Careful monitoring of the skeleton to detect problems with the spine or chest bone. […] Regular eye examinations to monitor for myopia and lens dislocations. […] There are also important lifestyle considerations for an individual with Marfan syndrome: Ensure a balanced diet, engage in low-intensity exercise and avoid smoking. These measures are also good for general health. […] Avoid heavy weightlifting and contact sports. Discuss with your doctor about recommendations for exercise and activities. […] With proper management of the cardiovascular manifestations, the life expectancy of someone with Marfan syndrome approximates that of the general population. […] Pregnant women with Marfan syndrome may be at high risk of obstetric and cardiac complications due to increased stress of the aortic wall especially during delivery. Please consult your doctor for preconception care and counselling.

• #2 Marfan Syndrome (Discharge Care)

  https://www.drugs.com/cg/marfan-syndrome-discharge-care.html

  Marfan syndrome is a disorder that weakens the connective tissue in your body. Connective tissue gives strength and support to tendons, ligaments, blood vessels, and other parts of your body. Marfan syndrome may keep many of these parts of your body from being as strong as they should be. This can cause problems in your eyes, heart, blood vessels, and bones. […] Call your doctor if: You have questions or concerns about your condition or care. […] Beta-blockers help your heart beat softer and slower. This may prevent damage to your heart and aorta. […] Ask about genetic counseling. Genetic counseling can help you understand your chances of passing the condition to your baby. Ask your healthcare provider for more information on genetic counseling. […] Your provider will check your aorta for any widening. Widening may mean you have weakness in the wall of your aorta. Pregnancy may put a lot of strain on your heart and may worsen your condition. You will need to be monitored closely during your pregnancy. […] Always consult your healthcare provider to ensure the information displayed on this page applies to your personal circumstances.

• #2 Pediatric Marfan Syndrome – Conditions and Treatments | Children’s National Hospital

  https://www.childrensnational.org/get-care/health-library/marfan-syndrome

  Bone and joint problems are treated by a doctor with special training (orthopedist or orthopedic surgeon). Treatment may include braces, therapy or surgery. […] Eye problems are treated by an eye specialist (ophthalmologist). Treatment may include medicine or surgery. […] Most children with Marfan syndrome can expect to live long lives. […] Talk with your child’s healthcare providers about physical activities that are safe for your child. […] In general, children with Marfan syndrome should not take part in strenuous activities like weightlifting. They also should not take part in competitive sports that make the heart work harder. […] Children with some heart problems are more likely to get infections that affect the heart. These infections often start in the mouth. So good oral hygiene is important. Make sure your child takes good care of their teeth and gums every day. Your child should also have regular dental exams. […] A small number of children may need antibiotics before some dental and medical procedures. Talk with your child’s healthcare providers about this.

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