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I've been silent for awhile
No, I did not fall into a black hole nor did I die and the dogs eat me. I have a hearing coming up before the BVA on the 10th of this month and have been crazy trying to prepare. Decided it was time for a little “me” time.
Some of you know that the region (Saint Petersburg) rated my MDS as anemia and not as leukemia and at zero percent. Leukemia is the coded disease that comes closest to MDS. The VA's "experts" Dr. Victoria Cassano, MD, Underwater Medicine and Dr. Michael Kelley, MD, Lung Cancer respectively opined (Cassano) MDS is NOT cancer and (Kelley) it is cancer just not malignant in my case.
I go in Tuesday with 400+ pages of data that basically says those two at best are totally ignorant of blood cancers or at worse lied.
Oh, I also carry personal letters written on my behalf by Drs. David Steensma, Richard Sloan (Harvard), Ruben Mesa (Mayo), Mikkael Sekeres (Cleveland Clinic) and Judy Karp (John Hopkins). You might want to look them up if you don't know who they are.
Now to share some hopefully good news for all. There is finally a fully funded study that is ready to kick off which is looking at the linkage between AO and MDS/AML. I am not at liberty at this point to reveal who or where but you will know as soon as I am told it is okay to publically release that information.
Attached is a PDF of what I’ll be saying Tuesday in Washington DC at the BVA. Please, please feel free to use all or any part of it. As soon as I am able to afford to do it, I will have the 400+ pages of endnotes scanned and share them with anyone interested.
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