Hello To all of my friends,
I wanted to let you all know that I am off to the NIH in Baltimore. If you dont know what the NIH is; its The National Institute of Health. It usually takes about 2 years to get accepted to go the NIH if they are doing your kind of testing.

I am just so excited.. I cant wait. I leave on Tuesday. They will be testing me for all kinds of things of Ehlers Danlos.
The study involves: questionnaires, history and physical exam, a "pulse wave velocity" study that measures how fast your blood travels from your neck to your groin using an ultrasound, MRA of your brain, and MRI's of your chest/abdomen and spine, echocardiogram, 24 hour Holter monitor reading, skin biopsy (with separate consent) and bone densitometry scan. The types of MRI /MRA scans are based on your diagnosis. Also, depending on your diagnosis, you may have an eye exam. You will have clinical and research blood tests, including DNA analysis, and clinical photographs (with separate consent).
Even though I have to get MRI'S a few times a year to check my anurysms. I am just happy to learn about myself. If any of you get a chance; go the firstgiving on my site and check it out. It says alittle more about my eds.
We must find a cure. I have lost to many friends to this..
I hope you are all well, and I am sending hugs your way..
Sincerely,
Grace

This is just a step in my life where I must put my friends, family aside and do what I need to do and learn about myself. Some people dont understand about EDs but Dont worry, someday you will..................†