Marfan Syndrome - Experience

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What is Marfan syndrome?

Marfan syndrome is a heritable condition that affects the connective tissue. The primary purpose of connective tissue is to hold the body together and provide a framework for growth and development. In Marfan syndrome, the connective tissue is defective and does not act as it should. Because connective tissue is found throughout the body, Marfan syndrome can affect many body systems, including the skeleton, eyes, heart and blood vessels, nervous system, skin, and lungs. Marfan syndrome affects men, women, and children, and has been found among people of all races and ethnic backgrounds.

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See what others are saying

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: 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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