Just found out -

[raina]

I am not really sure if I have Marfan's, but seem to have a lot of the symptoms. I am 32 years old, had a bone scan and found out I have osteoporosis. My doctor was surprised by this and she has ordered a bunch of other tests. My wing span is greater than my height, my thumb extends beyond the ulnar border of my palm when I make a wrist, I have palpitations and severe migraines sometimes. I have 2 wonderful children. My palpitations started with my 2nd pregnancy and the baby is 8 months old now. I can't wait for all the tests to be done and for the diagnosis to be confirmed. I am freaking out reading everything about Marfan's. Feel like I am on borrowed time. I am not ready to leave my children yet.

What is the definitive test for Marfan's? Anybody know doctors who specialize with this disease in the Georgia area. I looked up on the NMF website - there is no body in Georgia. Scares me even more.

[npp33]

Relax. It's not as bad as you think.

There's no definitive test - that's why it's called a "syndrome." Try visiting Emory University's medical school. They might have a Marfan clinic or cardiologists who are at least familiar with the condition. Alternatively, make the short flight to Baltimore, MD to visit Hal Dietz at Johns Hopkins University. Still alternatively, call Dr. Dietz's clinic and have him refer you to a cardiologist at Emory.

I keep referring to Dr. Dietz because of the groundbreaking research into ARB therapy he has done. ARBs are drugs that stop and even reverse aortic enlargement, thereby mitigating concerns about aortic dissection or rupture. Visit the "Pharmacy" section of this website to read about it. I can't count how many posts there must be on this site about the topic - I'm surprised that you haven't found them.

Eventually, get your kids checked too.

Let us know if you have questions.

Nick