Marfan Doctor?

Question

Well i just read lot of articles about Marfan.... i need to ask a question: Can a person have same marfan's symptoms and not be a marfan? i really need someone to join me and tell me or i can say help me please ....i'll give more info by mail or chat...

Answer 1

Melanie - I can tell that Enchanted Gypsy knows what she is talking about. She is correct. People can have SOME of the signs of Marfan syndrome without having the disease. At the same time, people with Marfan syndrome almost never have ALL of the signs (such as being very lanky or having very long fingers).

Currently, we use a system called the "Ghent criteria" to make the diagnosis of Marfan. We do a complete physical exam looking at many things including your body proportions, your skin, your eyes, your heart, your skeletal structure, etc. Whether there is a family history of Marfan is important as well. We make the diagnosis of Marfan depending on which physical signs are present. In general, we do not do genetic testing to make the diagnosis, in part because there are many genetic mutations (not just one) that can result in the Marfan syndrome.

If you have any questions, I would urge you to talk to your doctor about your concerns. Feel free to email me, though, if you have any more questions. (my username @yahoo.com)

Answer 2

Yes, you can have a lot of the symptoms of Marfan syndrome and not have Marfans. I know a few. Your best bet is to have genetic testing done, as not all people with Marfans are tall, or thin. One of my Marf friends is only 5'2" and is stocky, I am relatively tall, but not thin. Feel free to contact me, I am a 3rd generation Marfan. Dut I am by no means a doctor!

Answer 3

what are the criteria you have that you were diagnosed for marfan? tall, long feet, tall cleft palate, heart condition? I dont know what other syndrome that mimics marfan. What about your growth hormone? has the dotor excluded that one?