Hermansky-Pudlak Syndrome
Hermansky-Pudlak Syndrome (HPS), is a genetic disorder that I have. I have type 4. There are 7 known types. Some of the outward signs that I have are: Albinism, I bruise easily, I have low vision and prolonged bleeding. Thankfully that is all that I have right now. Some of the symtoms that I may or may not get are colitis, pulmanary fribrosis, and a waxy like substance that could build up in my organs.
I really don't care if I do get any of these things. It would suck, but God has His plans and purposes. I wouldn't trade anything to be "normal." But having HPS4 makes me even more rare!
I really don't care if I do get any of these things. It would suck, but God has His plans and purposes. I wouldn't trade anything to be "normal." But having HPS4 makes me even more rare!
posted by Whitey at 18:42
2 Comments:
Hey Danny,
Every once in a while I do a blog search for Hermansky-Pudlak Syndrome just to see if anyone else is out there - and I found you! I think I might know your mom from over the internet. My name is Heather, and I have HPS type 1. So does my brother. I'm 32 and my brother is 29. Your mom, if you're who I think you might be (how many people could there be in Oklahoma wiht HPS 4????) has my yahoo e-mail, but it isn't working right now. So, if you'd like to talk to another HPSer - my work e-mail is hkirkwood@ascendmedia.com.
So cool to find another HPSer! BTW - I think your blog is cool!
Hey Danny,
Thanks for posting to my blog!!! Grin! BTW...my yahoo address is working again, so all is well with the internet world.
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