Patient Comments: Marfan Syndrome - Experience

Please describe your experience with marfan syndrome.

Comment from: OsteoMan, 55-64 Male (Patient) Published: January 03

I was told at age 11 or 12 I had Marfan syndrome. This disease attacked my discs in my back. Almost every disc is bulging. I have had to have surgery on a couple. Twice I have pulled all my ribs out of place. The only way I could breathe was having my ribs wrapped really tight. They say they want to wrap my aorta with tape. I had to drop my health insurance because of the cost and I make too much on Social Security for Medicaid. But I am 56. I feel sorry for the poor young children who get this and die young. Like the lady with the 18 year old. My heart aches for these children. I would change places with them if I could. This disease is so very sad. I am sorry for all who have it.

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Comment from: paul, 55-64 Male (Patient) Published: December 27

I'm 59 years old and I found out I had Marfan syndrome when I was 20. I didn't let that stop me, I partied hard, played top grade basketball for years, had a family, and was a truck driver, but I always got my heart and eyes checked every 2 years. They are still okay but I now suffer from fatigue and severe pain in my joints so I can't drive trucks anymore, so I turned to acting and have been in movies and music clips. So I guess what I am saying is to do what you can do until you can't, then do something else. Just keep doing, if you stop it wins.

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Comment from: curlybill, 55-64 Male (Patient) Published: April 16

I needed abdominal surgery in 2012, I had it done arthroscopic at which time they inflated my abdominal cavity with air. It seems my connective tissue let the air travel between my fat layer and muscle on my whole torso up to my shoulders and remained inflated for about a week. I somewhat remember (because I was on pain medications) the doctor pressing on the inflated area and it sounded like popcorn popping as the air was migrating through the connective tissue. The doctor indicated this was unusual. That was when I was diagnosed with Marfan syndrome. I turned 60 in the hospital. I am now 63 and have had 2 emergency surgeries in the last 3 months for internal hernia, and small bowel obstruction. Luckily there was not a strangulation of the bowels and I didn't need resection. Life is an adventure.

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Comment from: MrOK, (Caregiver) Published: March 25

My son recently passed away due to a heart aneurism; he was to soon be 18. The medical examiner stated he died in seconds, there was no chance. He had detached retina, long fingers, caved in chest and other symptoms that relate to Marfan syndrome. I'm not sure if any proactive measures could have been taken, but for families who see these symptoms, please be as proactive as possible and seek medical attention. If an aorta replacement could have been done to save my son's life, he'd still be with us today. It's a very sad way to lose a young life, one who was extremely smart, bright and truly sincere.

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Comment from: MrOK, Male (Caregiver) Published: March 24

My son recently passed away due to a heart aneurism; he was to soon be 18. The medical examiner stated he died in seconds, there was no chance. He had detached retina, long fingers, caved in chest and other symptoms that relate to Marfan syndrome. I'm not sure if any proactive measures could have been taken, but for families who see these symptoms, please be as proactive as possible and seek medical attention. If an aorta replacement could have been done to save my son's life, he'd still be with us today. It's a very sad way to lose a young life, one who was extremely smart, bright and truly sincere.

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Comment from: haughtmichele, 3-6 Female (Caregiver) Published: January 16

My grand-daughter has Marfan syndrome and it has affected her heart. She has a good size murmur and we were told it is affecting her aorta. She has already had the lenses taken out of her eyes, and we now have to see a doctor for her spine. I am so scared, I hope they caught this in time and wonder why more people know don't about this. I hope this will qualify her for SSI (supplemental security income) because we are very poor.

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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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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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