Friday, November 22, 2013
Fundraiser Time with Oksana Henn!
Meet AIP Patient Oksana Henn & Her Fundraiser Event
I have AIP diagnosis for over 17 years already. I was diagnosed in Ukraine after I became completely paralyzed (it took me over 10 years to get diagnosed). It took me 2 years to get back up on my feet and functions again. When I moved to USA (Denver, CO) 15 years ago, I found out about Dr. Anderson and went to meet him to confirm my AIP diagnosis. Ever since that time he has been consulting me and my doctors on how to treat my symptoms and what to do with my AIP in general. Some doctors listen to his suggestions, some don't. Those who do not, think that they know more than AIP specialists and try treating me with different medications and methods that actually harm me. We need more doctors like Dr. Anderson, who actually understands and knows AIP and does everything to help patients like me. Over the years my AIP symptoms have been getting worse. Panhematin is the ONLY medication that treat my AIP attacks time and time again. The APF helped me many times with referrals to doctors, suggestions, and just listening to me. APF, thank you very much for everything you do! I have been enrolled in a few AIP research studies over the years. One of them identified the exact gene mutation that I have. This was completely free for me. Another study that is going on now identified my dad as being an AIP gene carrier. This information will help my family (sisters, nieces and nephews) to prevent from being sick for a long time like me. I want to help APF by running a fund raiser on my site. APF is doing a great job educating doctors to be specialized in AIP and other porphyrias. I want this and other fund raisers that I will have to help pay for education for Protect The Future program.
Our health and well being depends on them!
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Happy Thanksgiving everyone 2017