Question about Marfan syndrome - page 2

I am a second year nursing student and currently in my Ped. rotation. I recently watched an educational video on Marfan syndrome. I learned that this disease is a genetic disorder, and if a patient is suspected of having the... Read More

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    Discovery Health channel has a show on RIGHT NOW about Marfan syndrome. It's the medical mysteries show. Tons of information.

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    I cared for a girl that was in elementary school that had Marfan's. She had to be extremely careful at recess and phy ed not to over exert herself for cardiac reasons but also not to receive any hit to the head. Retina detachment is also a complication of this disease.
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    While sitting with the ladies in my ex-husband's family in Saudi a couple of weeks ago, my ex-sister-in-law (sorry for all the ex's, what do you say...)who is a highly aclaimed internist there, called my oldest son, who's just chosen orthopedic surgery as his speciality, to confer with her. The topic was my youngest son who is 14. She examined him, in one of the bedrooms, and suggested that he has Marfan Syndrome. I just thought he was tall and lanky. Thank God she noticed. I guess it slipped past all the docs in the US here, or just came out recently, during his growth spurt. He will have three exams, eye, heart and bone. It was a very rough time for me, learning that this is probably true. There are some great sites and sources for information. The hardest thing is that my baby just lives for soccer and wanted to "go out" for high school basketball this coming season.(The competitive sports and hard training will be out of the question.) I hope he doesn't have the disorder. He doesn't know anything yet, until he sees the doctors there in Riyadh, to make sure. I didn't stay there long, just a week, cause it's his time with his dad during the summer, plus the atmosphere about US citizens is currently scary. Anyway when he comes back, I'll be taking him also to one of the diagnostic and treatment centers over in St. Louis. From what I've read on the main site, he does appear to have the disorder. But it is encouraging to read the positive stories. Sometimes it is caused by a mutation in a specific gene. He has always been able to bend some of his fingers way back, and I have always sensed a fragility about him, but nothing specific. I'm sure this wasn't apparent until just recently, the past few weeks. praying he doesn't need heart surgery. I've also read that sometimes they are prescribed beta blockers. This is a blow, but it looks like it is something that can be lived with. I'm so glad I found this thread when I just did a search.
    Last edit by blondiii on Jun 20, '04
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    Blondii, I hope things turn out for the best with your son.
    Believe it or not, I know two people with Marfan syndrome. One thing I would just comment on is that all people with this disorder don't have an appearance like the "worst case scenario" pictures that are in many medical books. As with many disorders, there is a continuum of degree of severity. The one guy I know is tall and lanky but not at all like pictures I've seen in books. The other person I know is an attractive 7 year old girl who was diagnosed fairly recently (the clue was the shape of her chest). Her mom carries the gene and has a milder version yet (she is double jointed, etc. but no serious symptoms and no tall, lanky appearance - the only way she knew is because she was tested along with her daughter when she was diagnosed). Both the man and the little girl are living relatively normal, productive lives and seem to be doing well.
    Last edit by mitchsmom on Jun 25, '04
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    I've actually taken care of a father and son with Marfan's. The man' children also had Marfan's. They were all long boned and with extensive cardiac complications. They have had valve replacements and aortic replacements. The son had a stroke from untherapeutic coumadin levels. It seems that their hearts, eyes, and bones are elongated. The father and son both had aortic disections and emergency surgery. Both also had St jude valves. St Jude may have a lot of info on Marfan's. It is genetic and needs to be watched by a cardiologist.

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