Re: Poking my head in to say happy holidays!

[Guest guest]

Hi ...I'll jump in here and send you Good Luck wishes and a Happy New Year!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Poking my head in to say happy holidays!

I haven't posted in forever. It's been a very, very long fall. I went on disability leave from work as of Oct. 15th. I'm still in the Pirfenidone trial and actually my lungs are doing pretty well - it's the rest of me that's the problem. Grin!

HPS can make what would be a small thing for most people a big thing for me. I was missing so much work for medical crap that I was about to be fired.

While I'm poorer than a church mouse, and that's scary, the funny thing is I'm happier than I've been in a long time. Currently I'm trying to find a grant that will at least pay me part - time to work for the Network. Once I finally qualify for medical help from the government I'm nervous about trying to go back to a "normal job." HPS is progressive and it isn't like all my problems will ever go away.

But, Lord knows there's plenty of work to do at the HPS Network. We're growing a lot! So many people are misdiagnosed with IPF that actually end up having HPS PF. We get, on average, a new person a week and they're almost never referred by their doctor. Long story. Very frustrating.

At any rate, just wanted to wish everyone a happy holidays!

My brother is getting married Jan 3rd and I'm getting admitted to NIH Jan. 5th, so I'll be away a while.

Kirkwood

Director of Outreach, Vice President

Hermansky-Pudlak Syndrome Network

One South Road

Oyster Bay, NY 11771

1 (800) 789-9HPS

www.hermansky- pudlak.org

Personal blog: www.heatherkirkwood .blogspot. com

Search the Web at www.goodsearch. com and choose the HPS Network as your charity!