Patient Comments: Marfan Syndrome - Experience

Please describe your experience with marfan syndrome.

Comment from: peggy, 35-44 Female (Patient) Published: April 06

I am a 43 year old woman who has just been told I have Marfan syndrome. I have had a number of medical problems over the last 18 years. Tethered Cord Syndrome, Scoliosis, multiple hernia surgeries, and not least of all, a total lung collapse that required surgery in which the surgeon shaved down my lung, stapled off several blebs, and glued the lung to the chest wall. After that surgery, the surgeon advised that I had had approximately 6 prior collapses that healed on their own. I have long arms and legs and a short torso, along with some of the other characteristics of Marfan's. I don't know if this is something that I should now look into deeper. The doctor that talked to me about this said he can't be 100% sure that I have it.

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Comment from: lgreen710, 19-24 Female (Patient) Published: March 26

I've been in denial about having this disease for almost ten years now. I was 14 when I was diagnosed and never fully embraced the concept of it. I had to have rods fused to my spinal cord from Scoliosis which I developed from Marfan syndrome. From that point on I made it my goal to live my life as normal as I could. I ignored my doctors and played sports. While I had shortness of breath and dizzy spells I pushed on. Now it's starting to come back to haunt me. I was recently given this topic for my thesis paper. Thanks to the research I've been doing it motivated me to go to the cardiologist to get a check up. While my heart isn't in great condition it's not the end of the world. I know now not to push myself physically and how dangerous it is to ignore my doctors. I was depressed for a while, but then I realized that my life could be so much worse. I'm lucky to be alive. I have a great supportive family and I know that there is extensive research in the works. Most all I am thankful that my life is pretty normal.

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Comment from: Rwillis99, 25-34 Male (Caregiver) Published: March 17

My Best friend Died from Marfan syndrome Wednesday of last week, he had 2 surgeries within the last year to help him. The second surgery went well and he was recovering but it left his vocal chord paralyzed. He experienced a lot of back pain as the incision from the second surgery was very large. I spoke with him only a few days before his passing and he was in good spirits. He knew he had the condition and was not expected to live to graduate high school but he did, we also graduated college together and he married my cousin and they had a boy only 4 months before his death. I just want to say to everyone out there that has complications with this syndrome to don't give up hope and live everyday with a positive outlook on life as my friend did, he got to experience a lot and had a good life, even though he missed out on a lot he was able to experience a lot more than he ever thought he would. Be strong and maybe with the use of stem cell research and new technology we will one day be able to reverse the genetic effects of the dreadful disease.

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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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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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