5KidzRUs Posted October 10, 2010 Share Posted October 10, 2010 (edited) Anyone here ever deal with - or have relatives/friends that deal with - Marfan Syndrome? I just found out that my father - he was 6'7" - had this syndrome - and that it is hereditary. I did google this syndrome. I am concerned now that this is something I and my relatives need to worry about. Thanks! Edited October 10, 2010 by 5KidzRUs Quote Link to comment Share on other sites More sharing options...
Ferdie Posted October 10, 2010 Share Posted October 10, 2010 I would talk to your doctor about it at your next physical and make sure you get tested. You need to know if you have it. I am extremely tall and knew of a female volleyball player that was my height that died from it, (heart ruptured after practice). I asked my doctor about it and he performed an echocardiogram to rule it out for me. It is straight forward to treat if you do have it. Here is the wikipedia entry about the volleyball player who didn't know she had it. Her death may have saved her brother's life because it turns out he had it too. http://en.wikipedia.org/wiki/Flo_Hyman Quote Link to comment Share on other sites More sharing options...
Wyndie Posted October 10, 2010 Share Posted October 10, 2010 I have an aquaintance who has this but I know very little details. She tells me snippits of info every once in awhile, regarding how it affects her and how she wishes her parents had done things differently while she was growing up. (They didn't know she had it back then) Testing the rule it out (or in) would be prudent. Quote Link to comment Share on other sites More sharing options...
5KidzRUs Posted October 10, 2010 Author Share Posted October 10, 2010 OK - I will talk to our doctor about testing at our next appointment. Quote Link to comment Share on other sites More sharing options...
Dana Posted October 10, 2010 Share Posted October 10, 2010 Jonathan Larson (author of the musical Rent) had Marfan Syndrome and it was not diagnosed. He died of an aortic aneurysm which was misdiagnosed but might have been caught had he been aware of Marfans. I'd think having the testing done would be for the best. Some further info here at National Marfan Foundation. Quote Link to comment Share on other sites More sharing options...
tearose Posted October 10, 2010 Share Posted October 10, 2010 Besides an EKG (and, if needed, an MRI), you might want to have your eyes checked out, since people with Marfans can have a certain eye problem (there's a test that can be done by an ophthalmologist). Quote Link to comment Share on other sites More sharing options...
5KidzRUs Posted October 10, 2010 Author Share Posted October 10, 2010 I think tumors/cycsts might be an effect - I was told that my father was riddled with tumors right before he died. I ordered his death certificate to try to learn more. I was told there was an autopsy - I wonder if I can request that too. Quote Link to comment Share on other sites More sharing options...
celticmom Posted October 10, 2010 Share Posted October 10, 2010 I remeber reading at one point that Marfan is dominant rather than recessive so if you are unaffected it is highly unlikely that your children have it. I believe that Marfan impacts connective tissue and there is a very broad range of severity. Another interesting point is that some historians think that Lincoln may have had Marfan. Quote Link to comment Share on other sites More sharing options...
5KidzRUs Posted October 10, 2010 Author Share Posted October 10, 2010 What worries me is that - until near the end - my dad never knew he had it. He lived to be around 70 years old. I guess the small things were never enough to link To Marfans, until the end. We are all tall - I am around 5'10" and my brothers are all over 6' ... My four boys are all - or going to be - tall too ... But not the 6'7" that my dad was. Sorry about my rambling. I think that I will be concerned until testing puts my concerns to rest. Quote Link to comment Share on other sites More sharing options...
JeneralMom Posted October 10, 2010 Share Posted October 10, 2010 May I ask how you found out he had Marfan's and if it was diagnosed by a doctor? I am not being nosy but wonder how he got to 70s without it being diagnosed.There are so many symptoms of Marfan's but the usual ones that people associate with it are the long, very tall stature, extremely long limbs, long and thin fingers, aortic problems, visual problems, and alot of joint problems which result in frequent dislocations. I come from a very tall family (my brother and I are the only ones, males or female from my Dad's side under 6'2") but we luckily do not have Marfan's in the gene pool. Quote Link to comment Share on other sites More sharing options...
Alexandra Posted October 10, 2010 Share Posted October 10, 2010 I had a ped. cardiologist do some imaging on his heart and he ruled it out. Good luck with this. Quote Link to comment Share on other sites More sharing options...
5KidzRUs Posted October 10, 2010 Author Share Posted October 10, 2010 From what my brother told me, he was being treated by a doctor and the doctor diagnosed him. The doctor also asked permission from my brothers to do an autopsy - My brother said that the doctor said the many tumors were a bit unusual. Since I had not been in contact with then for many years I did not hear about it until this weekend ... Found my brother on MySpace after not hearing from him for 20 years. Wierd thing is that my dad was very tall, but to me his limbs did not look extra long - he just looked like someones beefy bodyguard. Quote Link to comment Share on other sites More sharing options...
Miss Marple Posted October 10, 2010 Share Posted October 10, 2010 Marfans has a wide range of symptoms/manifestations. A person with Marfans does not necessarily show all the physical symptoms. In fact, a person does not have to be of tall/long stature to have Marfans - that is just what is usually seen. But generally, the person comes from a line of tall relatives. Tissue samples can determine whether the person indeed has Marfans. We know of someone who had an aortic aneurysm (considered Marfanoid) who is not abnormally tall, and is, in fact, the shortest of all his siblings. Quote Link to comment Share on other sites More sharing options...
songbirdie Posted October 10, 2010 Share Posted October 10, 2010 I have some friends who have Marfan's in their family. Their mother died of the heart problems that go with it when she was in her 30's, and she wasn't extremely tall for a female. The son, who is now in his 30's, has it and has always been long looking - long arms and fingers, etc. He also has the characteristic cave in his chest. . .it looks like a bowl if he lays down on the ground. You truly could fill his chest with liquid and it would hold probably 2 cups. The daughter, in her late 20's, has it mildly, and has the concave chest structure VERY mildly. She is not tall, and doesn't even look "long". There are genetic tests that can be done, and I'd say that if you're worried about having it then request some testing. Quote Link to comment Share on other sites More sharing options...
Krista in LA Posted October 10, 2010 Share Posted October 10, 2010 I have two 2nd cousins with this -one died from it, the other is still alive. Their father, my mom's cousin by marriage, also died from this. My understanding is that it is a dominant gene so the fact that his other kids don't have it means that their children should be fine. However the one still living does have kids, so they could have it. If one of my parents had it, I would definitely get tested. Quote Link to comment Share on other sites More sharing options...
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