Patient Comments: Marfan Syndrome - Experience

Please describe your experience with marfan syndrome.

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: 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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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: 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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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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