Marfan syndrome

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What is the outlook for an individual with Marfan syndrome?

Proper medical management, especially of the heart, is essential for individuals with Marfan syndrome. If the heart is well-managed, the life expectancy of someone with Marfan syndrome is similar to that of the general population.

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Will I need surgery for Marfan syndrome?

Can I become pregnant if I have Marfan syndrome?

Can you participate in sports if you have Marfan syndrome?

What diet is good for people with Marfan syndrome?

Can I test my baby before birth for Marfan syndrome?

What style looks best on people living with Marfan syndrome?

Can I bulk up even though I have Marfan syndrome?

Is Marfan syndrome more common in men or women?

Why is Marfan syndrome more common in basketball players?

Are there many people in the United States who have Marfan syndrome and don't know it?

What is neonatal Marfan syndrome?

Will I need surgery for Marfan syndrome?

The need for surgery for individuals with Marfan syndrome depends on the symptoms. Not every person with Marfan syndrome will need surgery. Sometimes, surgery may be recommended for repair of the aorta (the artery that brings blood from the heart to the body) if it is too enlarged or if it has ruptured, cataracts (clouding of the lens of the eye), lens dislocation, severe pectus excavatum (when the chest wall caves in and impacts the position or function of the heart), and lungs (if lung collapse is a chronic issue). Regular evaluations with a specialist are important to prevent serious complications of these symptoms and to decide if surgery may be necessary.

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Can I become pregnant if I have Marfan syndrome?

Marfan syndrome is not known to affect a person's ability to become pregnant. However, if a woman with Marfan syndrome becomes pregnant or is planning to become pregnant, they should be evaluated and followed closely by a high-risk obstetrician throughout the until about 6 weeks after the baby is born. Frequent echocardiograms (ultrasounds of the heart) are also important during pregnancy and immediately after the baby is born as there can be additional stress on the heart.

A genetic counselor can help individuals and families navigate issues related to Marfan syndrome in pregnancy. In the US, genetic counselors can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.

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Can you participate in sports if you have Marfan syndrome?

Although every person living with Marfan syndrome (MS) is different and may have their own restrictions, in general doctors recommend that kids and adults with MS avoid contact sports, isometric activities, and exercise to exhaustion. Examples of these include: ice hockey, rock climbing, surfing, weight lifting, sit-ups, and pull-ups. However, staying active is important and recreational activities of low and moderate intensity are permissible and recommended. These include: bowling, skating, golf, brisk walking, and even doubles tennis. Other activities such as basketball, baseball, soccer, singles tennis, biking, and lap swimming are thought of as intermediate risk in MS and if they can't be avoided individual assessment and monitoring is strongly suggested.

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The Marfan Foundation paired up with Sticky J for medical ID bracelets. Some of the bracelets on their website are compatible with Backpack Health, which is an app where you can store your important medical information so that you have access to it anywhere. Medical ID bracelets are a great way to let people know that you have Marfan syndrome, in case anything happens to you and you cannot communicate this yourself.

References
  • Retrieved on September 15, 2019: The Marfan Foundation (https://www.marfan.org/what-expect/emergencypreparedness)

You can connect with the Marfan Foundation on Facebook here. You can even chat them on Facebook, and they typically respond within a day.

References
  • Retrieved on September 15, 2019: Facebook (https://www.facebook.com/TheMarfanFoundation/)
What diet is good for people with Marfan syndrome?

There are no dietary restrictions for those with Marfan syndrome.

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Can I test my baby before birth for Marfan syndrome?

Prenatal testing is available for Marfan syndrome via amniocentesis or chorionic villus sampling (CVS). Once the FBN1 pathogenic variant has been identified in an affected family member, prenatal testing for a pregnancy at increased risk and preimplantation genetic diagnosis are possible.

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What style looks best on people living with Marfan syndrome?

The Marfan Foundation currently has some fashion tips for teenagers who may feel self-conscious of their bodies:

  • For girls:
  • To elongate your torso, try wearing low-rise jeans that sit low on the hip. Also try a drop waist dress or top. This is a flattering cut that simply places the waist of a garment lower on the hips. The look originated with the 1930's flapper look and it's back in style!
  • In order to bypass the whole pant lenght dilemma completely, wear leggins for warmth with dresses and skirts, pair with boots, flats, or sandals, depending on the season.
  • Long tunic or t-shirt dresses and tops also give the illusion of a longer waist.
  • For boys:
  • Polo shirts and long sleeved shirts can hide a pigeon chest better than basic t-shirts.
  • Bootcut or flared jeans draw less attention to skinny legs than tapered jeans.
  • Try wearing 3/4 length shorts during the summer if you want to hide skinny legs.
  • If you are really thin like most of us with Marfan, try rocking the rocker look with skinny jeans and cool t-shirts and embrace it instead of trying to hide it!
  • Try pushing or rolling up long sleeves if they are too short.
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Can I bulk up even though I have Marfan syndrome?

There is no special diet, dietary supplement, or weight lifting program that will add desired pounds. Additionally, weight lifting is not a safe activity for people with Marfan syndrome. Some people put on more weight as they get older; therefore, it's important to have healthy eating habits now even though you main not gain any weight.

References
  • Retrieved on September 15, 2019: The Marfan syndrome (https://www.marfan.org/resources/patients/teens/answers)
Is Marfan syndrome more common in men or women?

Marfan syndrome is equally common in males and females.

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Why is Marfan syndrome more common in basketball players?

Marfan syndrome often results in taller than average height with long arm and fingers which can be an advantage in specific sports such as basketball or volleyball. However, the vast majority of tall athletes do not have Marfan syndrome. The concern about athletes and Marfan syndrome is that physically demanding sports could put stress on the heart and blood vessels and lead to life-threatening medical issues. Accordingly, some sports programs (particularly those for professional athletes) include heart tests like echocardiograms as part of their physical exams.

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Are there many people in the United States who have Marfan syndrome and don't know it?

Approximately 200,000 people in the U.S. have Marfan syndrome or a related disorder. Medical experts estimate that half are not diagnosed.

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What is neonatal Marfan syndrome?

Neonatal Marfan syndrome (NMS) or infantile Marfan syndrome is the most severe form of Marfan syndrome. The main clues that a baby has NMS is that their health and medical issues begin at birth or early infancy. Symptoms seen in children with NMS are different from person to person but often include: severe heart issues, long arm and legs, long fingers, unique facial appearance, loose skin, eye problems (enlarged cornea or glaucoma), poor feeding, and breathing problems.

One of the most life-threatening features of NMS is severe prolapse and leakage of the mitral and/or tricuspid heart valves that can lead to heart failure. The life expectancy in children with NMS depends on the severity of symptoms and how early the condition is found and treated. Some children pass away in the first years of life while other are stilling living with a good quality of life in later childhood and young adult life. Every child with neonatal Marfan syndrome is different, and the prognosis depends on each individual's medical issues, treatment, and disease severity.

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