Patient Comments: Marfan Syndrome - Experience

Please describe your experience with marfan syndrome.

Comment from: Daisy, 7-12 Male (Caregiver) Published: August 25

his spine, plus curvature that was discovered last year. She mentioned he was very tall for his age. He's 5.8' and thin. I explained to her he grew about 4 to 5 in. last year along with developing these weird problems. One leg is longer than the other, the orthopaedic doctor said his ligaments are too loose. He's always been double jointed and I never thought it would ever be a problem. So many doctors/specialists and no one has ever mentioned anything until now. The pulmonary specialist mentioned Marfan syndrome. What a shock! I was okay until I got home and did research I've been crying since then. I don't know how to feel, but he's going to get an Echocardiogram next month. I pray that his heart comes out okay. I wish this would have been made known to me sooner.

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Comment from: Female (Patient) Published: August 25

I am a girl of 17 years. I was diagnosed with Marfan's syndrome at the age of 11. At that very young age I could not take it so easily and I would cry over it everyday. I inherited this from my father, who inherited the same from his father. I am tall with a slim body. My arms, my fingers and my toes are longer than that of any other normal person. And the lenses of both my eyes are dislocated. I have undergone a surgery at the age of 15. Henceforth I am not facing many problems. However I suffer from a severe body ache especially with a severe pain in both my legs which is due to the weakness of the legs and pain in both the eyes very often. I appear normal like any other person but the physical pain that I always suffer from cannot be described, but I am mentally strong and can tolerate that.

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Comment from: Chris, 19-24 Male (Patient) Published: August 11

I am a 20-year-old lady who was diagnosed with Marfans syndrome at an early age. It was inherited from my mother who sadly passed away at 38 in 2002. Since then, I have undergone two aortic valve replacements. The first operation didn't go too well: Six months after the surgery I was rushed into the hospital and told my heart had dilated to 10 cm. But as long as I'm still ticking, I'm still happy.

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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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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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