Patient Comments: Marfan Syndrome - Experience

Please describe your experience with marfan syndrome.

Comment from: Euspears, 35-44 Male (Patient) Published: July 19

I am 39 male. I've had Marfan's my entire life. I've had 9 surgeries between stomach, both knees and my feet. Is not an easy syndrome but with proper care living a long happy life is possible. Fr all you that are upset at it, things could be worse.

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Comment from: JaPP1403, 13-18 Female (Caregiver) Published: May 23

My son is 14, and will turn 15 this October. We are waiting for results from his cardiologist to determine whether or not he has the syndrome. He is very slender, has long arms, long legs, and was just diagnosed today with scoliosis. He has had crowding of the teeth because of a narrow upper palette. We had the elbow and the thumb test and I am still not ready to accept it. Nine times out of 10 it was probably me that passed the gene. Good news is that it explains many of my own health issues. I immediately started reading about the syndrome once I got the call. I guess I'm expecting the best, but preparing for the worst.

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Comment from: Janice, 45-54 Female (Patient) Published: May 13

I'm 49 now and was diagnosed when I was 12. There was not much information about it then and I really did not understand it. Although advised not to have any, I had three children. I've played contact sport most of my life, not realizing that I should not have, knowing in the back of my mind that I have a heart problem. To add to this, I have chronic asthma. Lately, I have been short of breath and we thought it was just my asthma getting worse. Ha – looks like my friend Marfan has resurfaced. The point is, I have had a great life and tried to do everything I could, not thinking too much of the illness. Dealing with my asthma has kept me alert. Now I am starting tests, I'm worried, I'm teary – but I have had a great life. Stay positive and enjoy what you have, and make the most of your life.

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Comment from: 0-2 Female (Caregiver) Published: March 25

My 37-year-old son and his two daughters, ages 6 years old and 15 months, have all been diagnosed with Marfan's syndrome. My 6-year-old granddaughter has a very hard time learning and she rapidly forgets what she did learn. My 15-month-old granddaughter still is not sitting up or making any attempts to pull up or walk. She does like to be held up so she can bounce on her feet.

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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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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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