Patient Comments: Marfan Syndrome - Experience

Please describe your experience with marfan syndrome.

Comment from: FuzzySlippers, 19-24 Female (Patient) Published: March 28

I was diagnosed with Marfan syndrome at a very young age (6). I required one heart surgery in which they had to put an implant because the left side was working harder than the right side of my heart to be able to keep pumping blood through it properly. It neared killed me. I still remember always being tired and getting my teachers frustrated with me in school because it was hard to pay attention being exhausted all the time, due to one side of my heart working harder than the other. By 5th grade I had grown 8 inches in ten months! I was 5"0", then jumped up to 5"8". We could barely afford clothes for me because of my rapid growth. I finally stopped, for the most part, at the age of 20. I"m 21 now and hope I"ve stopped growing! I"m about 6"2" now. But I"m very lanky... and always have been, practically blind. I"ve worn glasses since I was 8. But that"s been my experience. I stay away from drugs and alcohol for concern of my implant. I had one surgery, I definitely don"t want another one.

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Comment from: Katnina, 0-2 Male (Caregiver) Published: March 04

My 2 1/2 year old grandson has Marfan. I am concerned because he is very delayed in talking. I am not able to locate any information that this is a symptom of Marfan. I wonder if we should be looking for another disorder. He has dislocated lens which the doctor wants to remove, wears braces, cyst on brain, on losartan, he is also tall and thin and totally adorable. He has vision, speech, occupational and physical therapy weekly.

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Comment from: tallgirl32, 35-44 Female (Patient) Published: January 08

I was diagnosed with Marfan syndrome at the age of 16, but have had various problems since I was 7 years old. I was tested for everything from cerebral palsy to muscular dystrophy. I kept falling over my own feet. I'm near-sighted, and have had my aorta replaced. I've had my right foot reconstructed, and my knees operated on. I did very well in school, and ran track until 5th grade when my heart problems started. The thing is that, because I have jaw problems and can't enunciate my words properly, people think that I'm not smart. I speak 3 languages, and have an IQ of 130.

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Comment from: GP, 45-54 Female (Patient) Published: October 24

I am a 54-year-old woman with Marfan syndrome. I am 6'4" tall! I found out I had this when I was in the 1st grade. I have a pectis carinatum, chest which protrudes out. I had very skinny legs and arms. But despite health problems with my heart, lungs and joints, I have managed to live a happy life, marry and have 2 children. One of my children has Marfan syndrome and the other one doesn't. Both my maternal grandmother and mother had Marfan syndrome and they lived to be 78 and 79 years old! I can't do all the things I want to do, and I am tired a lot, but I still live everyday to the fullest.

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Comment from: Trinh Nguyen, 45-54 Female (Patient) Published: August 11

Since I was 12 years old, I found that I was always taller than my classmates. I had long legs and arms. I also had nearsightedness, but I studied well in class. After graduating from college, I had an ache in my left eye because of a dislocated lens. It was then that I found out that I had Marfan syndrome. Two years later, I continued to have eye problems with my right eye. Now, in my 40s, I still feel well, but my heart rate has slowed down to about 60 beats per minute.

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Comment from: Ken Sherman, 55-64 Male (Caregiver) Published: October 15

I am married to a woman who has marfan syndrome. She worried that she would die the same way her father did, on an operating table while the doctors did their best to fix his resected aorta. She was 12. She has taken everything in stride when presented with a new challenge from marfan's. She has had the heart valve replacement, which saved her life when it could not save her father.

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Comment from: 25-34 Male (Caregiver) Published: April 02

My husband is 31 and was diagnosed with Marfan syndrome at age 5. He had an aortic dissection at age 28 and had surgery to replace the upper part of his aorta and repair his valve. Just three months ago, he had surgery to replace the abdominal section of his aorta. These were huge surgeries with many risks, but they went well, and he is doing great. Last week, we gave birth to our first son. Knowing there's a 50% chance of passing on the disorder, we were anxious to find out if our son had it. So far, he doesn't appear to have any of the characteristics of the disorder, and we are so grateful.

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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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