He Who Forges Possibilities
I’d heard for some time about Dr. Orhan Akman and his pioneering research into the nature and possible cure for APBD, Adult Polyglucosan Body Disease. It’s an untreatable, some call fatal, genetic disease with which I am afflicted. Based on what I’d heard about him and his luminous navigation of unchartered genetic frontiers, I envisioned Dr. Akman as a white-haired older sage, in the vein of Gandolf or Yoda. When we met, I saw a young, dark-haired man with steady brown eyes. He’s the right age to be my son.
We spoke about many things, including his family, his native Turkey, and APBD. I must admit that I got a little lost when he spoke of genetic mutations and such. He seemed relaxed and just a bit self-conscious when I took him outside to photograph him in the afternoon light. Then we headed to a gallery where I had a photo exhibit. He examined my work and expressed appreciation for it. I wanted to thank him in return for what he does, for forging a pathway of possibility and hope into the existence of uncertainty that is the world of APBD. I say to him a couple of the few Turkish words I know: “Sag olun.” “Thank you for doing what you don’t have to do.”
In previous blogs, you’ve read about the A-P-B-D indicators for the disease that’s known as Adult Polyglucosan Body Disease. If you believe you have those indicators, a simple saliva test can settle the question. Write to info@apbdrf.org to arrange for a test kit to be mailed to your home. And if you’re found to have APBD, know that researchers like Dr. Akman are hard at work, making progress to get to a cure