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sleepySheri"in august 2008, i accidentally found this site and i love it. i have struggled with narcolepsy since 1993 and to this day i have never met another narcoleptic in person. to share my story and read the stories of others as well as try to help others means the world to me. i want to thank all those who are there to listen to me and to give me advice...." (sleepySheri)

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Hgoff

Sister of a PAH patient

Hi I am new here so this might take me a while to figure out :) Last Month, My little sister was diagnosed with PAH. Her tests show that it is significant, but her symptoms don't. I guess that's why it was so hard to catch. At first, I thought this was a death sentance. My grandmother died of PAH when my Mom was only 15. So I was and still am scared. I don't yet understand everything, but I guess that will come in time. My sister still acts the same as she always has,so I'm not sure how she is really feeling emotionally. I'm scarred to ask.

We did get some good new after her tests last Thursday. She has no build up in her heart arteries. So that's good. She is on Viagra and Cumidin right now. Mom and Dad are working on getting Kchip and other assistance for my sister to get her other medications. I don't know much about that though.

I caame to this site to get some positive support from others who are going through what we are. I can't imagine what my parents are going through mentally. My sister just seems to take it in stride. I haven't seen her cry, or say much about it other than she hates wearing Oxygen all of the time. She is only 17 so she is still in high school.

We are still tring to take it all in though. I'm not sure about what her next steps are concerning college and career. But maybe that's too far ahead to think about.

If there is anyone reading this, please respond with whatever you feel that I need to hear. I will try my best to keep my diary up to date :)

God bless


:/

Jan 20 2011

okay so I was suposed to be going on a trip to the smoky Mountains this weekend, but it won't quit SNOWING!!! :( I really want to go.

Oh, and I met up with my new supervisor today for my Resident assistant position at the University:) It was fun. But now I have to move in all of my junk to the 4th floor. NO elevators. woo hoo

Oh and Faithe sent me a picture of a 1 gallon container of JIFF peanut butter. it was funny! :)

Well, that is all probably. I'll let you know if I get to go:)

god bless,

Haleigh



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