Patient Comments: Marfan Syndrome - Experience

Please describe your experience with marfan syndrome.

Comment from: A friend, 13-18 Female (Patient) Published: March 12

I am a 15-year old girl who has just been diagnosed with Marfan's syndrome, and the hardest thing I have found is telling people. The complex nature of the disease means it is hard to say right I have this, this, and this and I will get this and this. With Marfan's, there is no “will” only “might.” I might die of an aneurysm today, or in 10 years, 30 years, or even 50 years. The worst thing after being diagnosed is telling people you don't know what is going to happen, and often they take it harder than you yourself. Live your life because I am.

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Comment from: Cheryl, 55-64 Female Published: March 02

Marfan syndrome information needs to get out into the hands of the public more. My 34-year-old daughter just passed away with an aortic dissection from Marfan syndrome. I am sure I, her mother, have the gene that passed it on and will be tested ASAP along with my grandchildren. I understand now that February is Marfan Syndrome Awareness Month and plan on becoming an active member of the Chicago Chapter of Marfan Sydrome. What a horrible life-taking disease!

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Comment from: Mickeyd, 45-54 Female (Patient) Published: March 02

I was diagnosed with Marfan syndrome more than 25 years ago and have been living a great life, even with Marfan syndrome. When Marfan-syndrome-related incidents occur, it has been very difficult, as TIAs and mitral valve issues require my presence in the emergency room, and most doctors are not familiar enough with the disorder to treat me: They look at me and ask what Marfan syndrome is! Not only is this terrifying, but it is also very dangerous: I worry about aortic dilatation while they are reading up on the Internet! I have a great team of specialists, but they are not always available.

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Comment from: Euspears, 35-44 Male (Patient) Published: July 19

I am 39 male. I've had Marfan's my entire life. I've had 9 surgeries between stomach, both knees and my feet. Is not an easy syndrome but with proper care living a long happy life is possible. Fr all you that are upset at it, things could be worse.

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Comment from: JaPP1403, 13-18 Female (Caregiver) Published: May 23

My son is 14, and will turn 15 this October. We are waiting for results from his cardiologist to determine whether or not he has the syndrome. He is very slender, has long arms, long legs, and was just diagnosed today with scoliosis. He has had crowding of the teeth because of a narrow upper palette. We had the elbow and the thumb test and I am still not ready to accept it. Nine times out of 10 it was probably me that passed the gene. Good news is that it explains many of my own health issues. I immediately started reading about the syndrome once I got the call. I guess I'm expecting the best, but preparing for the worst.

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Comment from: Janice, 45-54 Female (Patient) Published: May 13

I'm 49 now and was diagnosed when I was 12. There was not much information about it then and I really did not understand it. Although advised not to have any, I had three children. I've played contact sport most of my life, not realizing that I should not have, knowing in the back of my mind that I have a heart problem. To add to this, I have chronic asthma. Lately, I have been short of breath and we thought it was just my asthma getting worse. Ha – looks like my friend Marfan has resurfaced. The point is, I have had a great life and tried to do everything I could, not thinking too much of the illness. Dealing with my asthma has kept me alert. Now I am starting tests, I'm worried, I'm teary – but I have had a great life. Stay positive and enjoy what you have, and make the most of your life.

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Comment from: 0-2 Female (Caregiver) Published: March 25

My 37-year-old son and his two daughters, ages 6 years old and 15 months, have all been diagnosed with Marfan's syndrome. My 6-year-old granddaughter has a very hard time learning and she rapidly forgets what she did learn. My 15-month-old granddaughter still is not sitting up or making any attempts to pull up or walk. She does like to be held up so she can bounce on her feet.

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Marfan Syndrome - Causes Question: What was the cause of your Marfan syndrome?
Marfan Syndrome - Treatment Question: What kinds of treatment have you or someone you know undergone for Marfan syndrome?
Marfan Syndrome - Symptoms Question: What symptoms do you experience with Marfan syndrome? How do you cope with them?

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