Patient Comments: Marfan Syndrome - Experience

Please describe your experience with marfan syndrome.

Comment from: heartbroken, 19-24 Male (Caregiver) Published: March 10

My 22-year-old nephew passed away suddenly from an aortic dissection. The autopsy results discovered Marfan's syndrome. He thought that he had the stomach flu. This was five years ago, and his parents and our family will never be the same!

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Comment from: Joanne, 25-34 Male (Caregiver) Published: March 02

My husband was born with Marfan syndrome. The doctors did not realize he had it until he was 4 years old. He had the ascending heart valve replaced in 1999, and in October of 2008, he had the descending heart valve replaced. Recovery is very slow for him, but he is battling through.

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Comment from: tlcondon, 25-34 Male (Caregiver) Published: May 27

My husband, who is 34, is currently going through the testing to see if he has Marfan syndrome. His brother, who was 40 when he passed a month ago, died of an aortic aneurism. He had no idea he had Marfan syndrome and neither did we. Since then, my husband's dad has been diagnosed with it also, which we expected, he also had COPD. My husband has a lot of the characteristics of it. He is 6'6" tall. Very long legs, fingers, toes, etc. He is flat footed, slender face, crowded teeth. He went for his first appointment today with the cardiologist and had an abnormal ECG. He goes Thursday for a CT of his chest and abdomen. This has been so stressful for his entire family. One of his other brothers has been having chest pains also. (There were 4 of them). I have been doing a lot of research on Marfan to learn as much as I can on this, just to be there for the family. There just seems to be so much to it.

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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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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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