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Friday, August 5, 2011

I Have A Secret...

I said I wanted this blog to be a bit more personal. To do that, I have to be honest. It's not something that upsets me, or am ashamed of. Here it is...
I have an auto immune disease called Evans Syndrome.
http://www.evanssyndrome.org/
My platelets and hemoglobins drop dangerously low.
I've had Evans Syndrome since I was sixteen. This year I had a total of fourteen transfusions and been on steroids. I use to take ten a day. Thank goodness that is over! They gave me a lot of side affects.
The good news...I have been in remission for four months!! :)
The bad news...I can't even ride a bike. :(
See, my blood doesn't clot. Therefore, I hemorrhage.
When I was seventeen I had a bone marrow biopsy. I remember thinking, "Oh, it's no big deal. They just stick a big needle in your hip, and take some of your bone marrow." I didn't think my doctor (who has been practicing for a long time) would mess up...Well he did. I got really sick afterwards. I had a blood infection and almost died. I think it is safe to say I never went back to that doctor again.

Right now, I am doing great. The previous treatments I had seem to be working great! I just wanted to share this, because it is a big part of my life and daily decisions. Evans Syndrome is rare, so I don't expect anyone to have heard about it.

http://www.pdsa.org/ Platelet Disorder Support Association. I'm buying the Got Platelets bracelets :D
Thank you everyone, who has taken the time to read this post and/or the links provided.

4 comments:

  1. Hi Christine!! Found you on 20sb :) Just wanted to say, hope things keep going well for you. I'm in a health program and we studied blood disorders last year but I didn't remember Evans. Thanks for sharing!

    <3 Liz

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  2. Wow! I'm sorry to hear that! I hope things become good in your future and they can find a cure or something. :(

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  3. It's okay. I'm doing pretty well.Remission for four months :)
    Thanks for the kind comments!

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  4. Thanks for sharing your secret. <3

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