Mark. What a wonderful article. Thank you so much. I have dreams of someday be able to raise so much awareness for AA that it too will become as commenly spoken of as cancer. I have had moderate (not severe) AA for 11 yrs. now, and just in the past 3 years or so, our fine Doc's at NIH have found that my "rare" form of the disease is more than likely genetic!! Which poses the problem that I am unable to be treated with immunosuppressive therapies, because my DNA will keep reproducing this mutated genetic gene that is causing the Bone Marrow to fail. I do have a BM match with my brother, but there again, not "positive" because it is genetic that if i recieve his bone marrow that it might all just come back.... to add a little icing on the cake, my (soon to be ex) husband, does NOT believe that I am sick, because I don't "LOOK' sick, and he feels that it is just a case of a LAZY wife. Amazing... i know, I guess that is why I am divorcing him!! haha. He is military, so he was rarely at any of my doctor appt.'s & never made it to a single one of my transfussions... Thank God I have a wonderful support from friends and family. Although, I am still a bit of a medical mystery as to why my disease has not become more agressive, despite an almost non-existant ANC, and a BM cellulartity of less than 5%, plus the bi-monthly blood transfussions (my WBC lingers a high 2, and HBG high 7's low 8's) I function pretty well, and am grateful everyday that I am able to wake up and function as a semi-normal person.
I have been on disability for over 3 yrs., so I keep myself busy with Dr. appts. (of course) traveling back and forth to NIH (fm TX) and caring for my amazing daughter (that also has the mutated gene, but is not affected as of yet). Someday I will be healthy enough to raise that awareness like I'd like to, and make a difference like you have. Thank you again, and Godspeed.
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Falling Into a Medical Abyss
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Patients are often tossed from doctor to doctor and given little time. I got two doctors. First a fellow came to take my history and examine me. Not a student or resident but a hematologist-in-training rotating through this specialty clinic and serving as a kind of Watson to Maciejewski's Holmes. That was my first impression of the idiosyncratic doctor as he burst into the room, shook my hand and leaned against the sink, his hands empty, his hair tousled, his blue eyes piercing yet not unkind, and began, as though we had long been friends, "So, Mark, tell me …"
He spent more than an hour with me, patiently explaining my options, the history of the disease, the current state of research. Thirty years ago the severe form was always fatal, but now it can be pushed into remission or even cured by a bone-marrow transplant or less risky immunosuppressant treatments. When my mom let slip that I was a writer, the doctor's eyes lit up and he implored me to write a story about scientists, a thriller, filled with intrigue. Not the sort of tale to give a new patient confidence, but that was the best thing of all, not to be treated as a patient.
So wear your ribbons and watch your telethons, but know that your cures might be born in an orphanage like Maciejewski's. And even if they aren't, these doctors who treat rarities deserve high praise for their devotion, whether they save a hundred million lives, or just one.
Schreiber lives in Columbus, Ohio.
Schreiber lives in Columbus, Ohio.
© 2008
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