[Jbsx19]

Robbie,

I am located in Florida (East Central) and was diagnosed VSAA in May 2003. My choice was to travel to NIH, as mine was an emergency situation and I did not have the time to research options when I was diagnosed. In Hindsight, now that I am in remission 100%, I would NOT have made any other choice anyway. The care and treatment at NIH is uncomparable to any other. Needless to say, NIH did give me the option of being treated there or Dr. Young's referral for me would have been to Shand's in Gainesville (had I opted to go directly to transplant as opposed to the ATG/Cycl route).All I'm trying to say is that it may be worth making the trip to NIH so that you become a patient thru them.That way, You have the initial treament at NIH,all the research and statistics would be recorded by them and your follow up care could be done locally with revisits to NIH once a year or so (that incidentally, are paid for by NIH). Any other facility that you are treated at are NOT obligated to share their (your) information with NIH. I do know of another patient here in FL that is currently being treated at Moffet in Tampa (they opted NOT to make the trip to NIH) and they are not completely happy with the communication of their treatment between the NP's and Dr's. Just some information for you to maybe help in your research before you make a choice. Let's face it, we are all hoping and praying for better treatment options and a cure for bone marrow failure diseases that are rare in themselves. We all have a choice in helping to make that happen.
Please feel free to contact me ,anytime, if I can be of help sharing my experience at NIH or just to talk. Take care and be strong.

Judi