Patient Comments: Marfan Syndrome - Experience

Please describe your experience with marfan syndrome.

Comment from: laststand, 13-18 Female (Patient) Published: May 27

I'm a 14 year old girl who got diagnosed with Marfan syndrome when I was 8, I have learned to deal with this, but still sometimes I have trouble, wondering why me? When I was 5 I had an eye operation because I had a problem with it caused by Marfan's syndrome. I also have a bump in the middle of my chest which every one could notice well until I started growing breasts. Later on this year I am having cardiac surgery at the end of this year. It frightens me a lot. I know no one I am around knows how I am feeling or what I'm going through, but with my friends and family helping me get through it. I'm trying to keep positive.

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Comment from: 13-18 Male (Caregiver) Published: May 11

My 13 yr old grandson has dealt with no energy (he was active and on the golf team). He has suffered pain in all joints, back, stomach, head, chest, poor vision, etc. I have seen him slowly withdraw from everyone. His school work has suffered. This has gone on for a year. We finally realized his chest looked different and the testing began. He is being genetically evaluated and is schedule for Pectus Excavatum surgery early June.

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Comment from: 45-54 Male (Patient) Published: March 19

I have Marfan syndrome and have been hospitalized on several occasions for related problems, I have CHF, pad, neuropathy, MVP, and several other problems but I am 48 years old and I intend to live until I die. The worst part is the pain from the back and nerve problems and finding a doctor that understands that you need relief from the constant pain. Even just knowing there is a risk of addiction. The answer is not refusing medication, but closer monitoring of the patient and the course of the disease.

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Comment from: Lookey, 55-64 Male (Patient) Published: March 19

My baby Sister at age 50 was just diagnosed with this. She is waiting for her Doctors to schedule her for surgery. I am going in to be tested for this as well as other siblings and children. Does anyone one know what the percentage is for siblings/children to have malfan?

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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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