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Conditions and Diseases > Genetic Disorders Forum > Marfan syndrome ?
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Q: Marfan syndrome ?
asked by: zCAKEz on October 20th, 2009
New User
Tall, 6'1 1/2 - 6'2 165 pounds and 15 years old
Had a 6'3 grandpa who died of a heart attack
about 3 4/5 - 4 inch long index finger
Positive wrist sign, negative thumb sign
Stretch marks on back butt and front thigh
75" wingspan which is greater than height
Legs longer than torso
34 inch inseam
No KNOWN eye problems
No KNOWN family diagnosis
No high palate
Muscle definition
Lift weights
play competitive basketball and used to play football
size 11 shoe and 2 inch big toe so sort of small feet for my size
No PE, PC, or scoliosis
No asthma or brething problems and dont tire out very easily
Ok does this sound like Marfan syndrome or am i just tall and lanky with stretch marks (i did grow from like 5"11 - 6"2 in like a half year i think)


should i go further and see a doctor about this or do you think im fine please dont give me a rant about how dangerous the syndrome is because i have done research just tell me your opinion on my having it
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MarfGirl
replied on October 20th, 2009
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Marfan syndrome
It's possible that this could be Marfan syndrome or a related disorder (Loeys-Dietz, Ehlers-Danlos, or MASS Phenotype). You should discuss getting an echocardiogram of your entire aorta (an MRI or CT scan will also do) with your doctor to check for aortic enlargement.

Good luck!
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zCAKEz
replied on October 20th, 2009
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Thanks for the help but this information was already known to me i appreciate your concern though
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MarfGirl
replied on October 20th, 2009
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Ok, no problem. It's just that you really can't make a diagnosis without having an echo...that is part of how you differentiate between the disorders. Depending on where you live there are Marfan clinics around the country that specialize in helping people get diagnosed with the correct disorder (if they have one), but if you've talked with the NMF I'm sure you already know that.
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zCAKEz
replied on October 20th, 2009
New User
Ya but i can see i don't have EDS, or loeyz-dietz as i have practically none of the symptoms listed on wikipedia
the only other one i see as possible is MASS phenotype but that is very similar to marfans. I just wanna see peoples opinions based on my outward features if they think i have it or not
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MarfGirl
replied on October 20th, 2009
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I think you have enough symptoms and family history to warrant seeing a cardiologist. I have Marfan but, I'm no doctor. MASS and Marfan are caused by mutations in the same area, FBN-1. One of the only ways to tell between the two is to have an echo. The difference is internal: MASS doesn't carry the aortic problems that Marfan does. If you have an enlarged aorta and are lifting weights and playing competitive sports, you're putting yourself at risk for big problems. It's better to be safe than sorry and just get it checked to be sure, you know?

Also, JMO, but you should be looking at the NMF's website for info on Marfan and related disorders and not Wikipedia. Then you can be sure the info you're getting is 100% correct.
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zCAKEz
replied on October 20th, 2009
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gahhh if i have to quit basketball i would be so pissed haha
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zCAKEz
replied on October 20th, 2009
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ha i was (may still be) about to play varsity as a sophomore
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MarfGirl
replied on October 20th, 2009
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no sense in worrying about the future till you have the test done!
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zCAKEz
replied on October 20th, 2009
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ya a boy can hope
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MarfGirl
replied on October 20th, 2009
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good luck!
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zCAKEz
replied on October 20th, 2009
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are you still allowed to shoot around or do any type of isometric excericises with marfans such as wall sits, 6 inches leg raises or lightweight curls
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MarfGirl
replied on October 20th, 2009
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Isometric exercises are not recommended. However, I would not consider lightweight curls to be isometric. 5-10 lb weights, maybe a little more, should be fine for most people with Marfan. I also did leg raises, with no weights attached to the legs. I wouldn't do wall sits with weights. Actually, I wouldn't do wall sits period b/c they are terrible for the knees, but that's me.
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