|
Hi sneipp,
I would recommend consulting with an expert in rare bone marrow failure diseases, if only to rule this option out! Dr. Neil Young at NIH is very interested in this area. You could drop a note to his nurse Barbara explaining the situation, and they will determine whether your case is compelling enough to pursue. With NIH, all medical expenses are paid.
Dr. Jason Gotlib at Stanford is another more local option to consider for a second opinion, assuming your insurance allows.
Unless the doctors that you have consulted with are experts in SDS and other rare genetic bone marrow failure diseases, I would seek out a second opinion from someone who is!
__________________
58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
|