What is Marfan Syndrome
Marfan syndrome is a connective tissue disorder characterized by unusually long limbs. The disease also affects other bodily structures — including the lungs, eyes, heart and blood...
Join Now
|
Marfan questions
|
Watch this |
| View More Posts Ignore |
Hi all,
Any advice on what to ask my rhuematologist when I go to see if I have marfan syndrome on the 27th of this month? I am confused and scared. I recently had an echo done and we are waiting on that. The tech did say my aorta was fine. Posted on 04/07/09, 10:04 am |
| 3 Replies | Add Your Advice |
| View More Posts Ignore |
jennya,
Express your concern about Marfan and let your doctor take the lead. New strides are being made in treating and managing genetic diseases each year, so your doctor will be a very good place to begin. 
|
|
|
|
||
| View More Posts Ignore |
Hi Jenny,
Hope you had a nice Easter. If your echo was fine, then Marfan's should not be too scary. My son is 19 and started college last Sept. He has Marfan's. I know how hard it is sometimes to get a diagnosis. Have you had you rvision checked. Have you checked out the new NMF connections site. There are lots of questions and answers there. http://nmfconnect.marfan.org/ Good luck--let us know how it goes with your MD. Stephanie
|
|
|
|
||
| View More Posts Ignore |
I was told a yearly Ultrasound is a good option too. I'll be doing that each year since I was diagnosed with it earlier this year. My concern in the long-run is the aorta tearing.. Once that happens its pretty much really too late for you. Thing is.. with Marfan.. the stretching constantly continues... so it'll have eventually.
|
|
|
|
||
| Add Your Advice |
