Patient Comments: Marfan Syndrome - Experience

Please describe your experience with marfan syndrome.

Comment from: 45-54 Male (Caregiver) Published: May 11

My wonderful husband has Marfan syndrome. He has had several life threatening operations, and still lives his life to the fullest. He is a great hunter, and his father died when he was 6 of a aorta dissection. The doctor's just didn't know enough about Marfan's back in the 60's, and he died in the emergency room. My husband is 45 now, and has lived many years longer than his father, thanks to the great doctors. His last surgery was 10 hours. The heart valve they put in when he was 20 got infected when he was 35, and He had to receive human heart valve and aortic tissue, to save his life. That was many years ago. Since then, his aorta has dissected over a foot, and stopped at the kidney area. He has had many problems over the years with his condition, but he stays positive. His sister, bless her heart, died two years ago from the Marfan's syndrome. She had a rod put in her back for scoliosis. She lived her life as she wanted, with no doctors, or treatments. She was 45 when she died. Her aorta ruptured. Her two daughters have a form of the syndrome, and one of them, also has a rod in her back. The other has some of the symptoms of the Marfan's, but has been in good health with no surgery. My husband never had children because he didn't want to pass on the gene. He has lost most of his family to Marfan's syndrome, as all but one in his family on his fathers side had the disease. I just want to say that he is a strong man, who knows his limits, and takes care of himself. Except for dragging deer out of the woods that is. His last surgery was years ago, and he was told that the tissue would be good for at least 10 years. He is getting MRI's and check-up's because he says it is "up to me weather I live or die" He may have Marfan's, but he is getting old and loving it!!

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Comment from: mommanette12, 35-44 Female (Patient) Published: April 27

I am a 40 year old mother of 12. Six that I gave birth to and the other six I was blessed to have acquired. I was diagnosed with Marfan's Syndrome 10 years ago. I immediately went into a deep depression. After a few months of feeling sorry for myself, I decided that I was going to live what life I had left. I ignored my doctor and tried to ignore the disease as much as I could. The doctors told me to take it easy and don't over work myself. I not only played basketball, but I coached two youth teams. That was until just two months ago, when I almost died and began to have more problems than ever with my heart. Now I'm scared. I worry about my children. I'm all they have to depend on. What will happen to them when I'm gone? I feel soooo helpless, there's nothing I can do except wait to die and hope that one of my children are not the person to find me. I wish now that I would have listened more and followed my doctor's advice. But I tell you, it is nice to know that I'm not alone with this condition.

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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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Patient Comments

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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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