Patient Comments: Marfan Syndrome - Causes

What was the cause of your Marfan syndrome?

Comment from: Angry Mom, 13-18 Male (Caregiver) Published: October 11

My son recently passed away. We had to be told by the Medical Examiner that he had Marfan Syndrome. When my son was born, he was premature, had club feet, double hernia surgery and a collapsed ear drum and a hole in the other ear. He had a number of specialists that he saw over his 18 years and not one of them diagnosed this. I'm angry right now because he is no longer with me and after reading and researching I find out that there were things that could have been done to extend his life had we known. I will be calling each and every one of his doctors to let them know that had they took the time his death could have been prevented...I guess all doctors see are dollar signs these days...they won't even give you test results over the phone because then they can't bill for a visit. My son suffered horribly for 18 years...it's sad he had to die to be pain free.

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Comment from: stacey.caulk72, 35-44 Female (Patient) Published: July 25

I was expecting my 4th child at age 26. I later found out that my mom had Marfan's in 1972, but since research was just beginning, nothing was done. I had a Mitral Valve Replacement with St. Jude valve about 10 years ago and I have been doing just fine ever since.

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Comment from: lee hayes, 35-44 Male (Patient) Published: November 08

Hi, recently my sister has been diagnosed with amongst other things marfans syndrome, from her talking to her consultant who has said that she has the disorder, he has said it is passed along from one parent to their children. I have been suffering now for a few months with black things in my vision and excessive sweating, sweating mainly at night via my head, my pillow is wet with sweat every morning; I also have an arched pallet and flat feet. I meet a lot of the criteria of marfans syndrome, but my doctor will not entertain my concerns even though I have explained to him that two of my sisters have been diagnosed with marfans. I also suffer fron ankolosing spondilitis, could the spondylitis actually be anything to do with marfans.

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Comment from: mom, 35-44 Male (Caregiver) Published: August 10

I am the mother of two sons who were diagnosed with Marfan syndrome in 1983 at the ages of 3 and 5. I was also diagnosed at that time at the age of 29. It has been very hard watching the pain my sons have had to go through over the years. Sometimes you wish you had never found out about it because of all the worrying and hurt. Have my beautiful sons with me today. They are now 33 and 35 and through the grace of God and wonderful doctor's we have had many miracles happen. So to all parent's and families of marfans patients, hang in there and cherish every day with your loved one and stay strong.

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Comment from: suziek, 55-64 Female (Patient) Published: July 05

I am a 56 year old female just diagnosed with Marfans. I have blood clots in my right lung and will be on Coumadin the rest of my life. I have multiple dural ecstasies down my spine and a very large cyst wrapped around my sacrum. The neurologist in Tucson told me I have to go to phoenix for an interventional radiology procedure. I am in constant pain, have seen the eye specialist and the urologist, I am also incontinent Now I am afraid that I will drop dead at any minute from an aneurism, the only good thing about that is it is quick.

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Comment from: Zcat, 13-18 Male (Patient) Published: April 23

I am 18 years old and I am new to the knowledge of Marfan Syndrome. I have very long arms and legs and am 6'5" and 135 lbs. I have no sight in my left eye and I have not had any dramatic heart surgeries or problems for that matter. Sometimes my heart beats really fast, but gets better as time passes. I am afraid that growing up will bring me and my family problems with my syndrome. I don't know what to expect and I wouldn't mind a little positive information.

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Comment from: e3rose, 25-34 Female (Patient) Published: February 14

I was diagnosed with marfan syndrome just last month. I felt so bad, and I went into a deep depression. I was afraid that every time I close my eyes in the night I won't be able to wake up in the morning, but then I realized that hey, I may have a syndrome in my system but it does not mean that I don't have a life to live. It also does not mean that I don't have a family to love, a man to whom I can be a wife and a God to whom I can serve, love and thank for. I just have an ECG test and it says my heart is normal. Just had an x-ray, and says that nothing is wrong with my inner system, but my eye doctor says that the lens on my left eye is dislocated so I need to have a surgery. To all individuals who have been told to have marfan syndrome, just want to share that at the end of the day it is still God who decides when we die, and what matters most is that we know where we are bound to after our earthly life. God bless. Jesus loves you.

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Marfan Syndrome - Experience Question: Please describe your experience with marfan syndrome.
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