18 year old daughter with AA or MDS. Dr's can't tell difference. Holding her own

[anneman]

Hello there,
My daughter was diagnosed with Aplastic Anemia/Hypoplastic MDS in May 2012. As well as HypoThyroiditis and Gilberts Disease... what a whammy...

We were told that she would need a Bone Marrow Transplance in Nov/Dec 2012 but her blood levels keep fluctuating so no treatment has been needed at this time.

Her last Blood Transfusion was Aug 30, 2012 and so far things are still holding.

Has anyone else overcame this Bone Marrow Failure without treatment?

We are just confused because all we keep having to do is have follow up blood work bi-weekly and keep an eye on her. Not sure if something is going to happen or what to think...

They have currently found her 5 potential bone marrow matches and I haven't heard anything other then that form the Bone Marrow Dept. at Children's Hospital.

Please, if you have any advise or can fill me in on your situation, that would be greatly appreciated.

Thanks, Anne

[lindajo]

I was diagnosed at 29 and was told I would need a transplant soon. That was in 1991. Although I have a sister who is a perfect match I have never advanced to needing a transplant.

Yes it is possible to stabilize and get better without a transplant. It is important that you keep an eye on diet exercise. The first few years were a roller coaster for me and a great deal of the time it was one step forward and one step back. Don't give up. Life may not be what you envisioned it would be but that doesn't mean it won't still be just as wonderful.