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Hello from the lurker

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I just thought I'd check in even though I don't post much. Hello to all the new folks. My name is . I was diagnosed with PF in 2006. It's caused by Hermansky-Pudlak Syndrome, something I've had since birth but didn't know about until 2002. I'm very active in the HPS world and manage our HPS yahoo groups etc. Also because of HPS I have a bleeding disorder, Crohn's and am legally blind.

I'm 35, still working as a journalist etc.

I'm also part of a pirfenidone study. Actually I go back for my two-year check up next week at NIH! I'm getting nervous. Grin!

It seems like I've been more short of breath lately, but my allergies are really kicked up too - so I keep thinking it's a combination of being paranoid about my trip coming up and the allergies. Guess we'll find out next week.

Hermansky-Pudlak Syndrome 02/PF 06

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,

It's great to hear from you! I'm glad that you are doing ok and hope that all goes well at NIH. It's always inspiring to hear how you carry on despite all the challanges and stumbling blocks. Please continue to check in when you can, you are always a breath of fresh air!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Hello from the lurker

I just thought I'd check in even though I don't post much. Hello to all the new folks. My name is . I was diagnosed with PF in 2006. It's caused by Hermansky-Pudlak Syndrome, something I've had since birth but didn't know about until 2002. I'm very active in the HPS world and manage our HPS yahoo groups etc. Also because of HPS I have a bleeding disorder, Crohn's and am legally blind.

I'm 35, still working as a journalist etc.

I'm also part of a pirfenidone study. Actually I go back for my two-year check up next week at NIH! I'm getting nervous. Grin!

It seems like I've been more short of breath lately, but my allergies are really kicked up too - so I keep thinking it's a combination of being paranoid about my trip coming up and the allergies. Guess we'll find out next week.

Hermansky-Pudlak Syndrome 02/PF 06

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Hi -

Just wishing you a peaceful trip to NIH with good results.

Joan

>

>

> I just thought I'd check in even though I don't post much. Hello to

all

> the new folks. My name is . I was diagnosed with PF in 2006.

It's

> caused by Hermansky-Pudlak Syndrome, something I've had since birth

but

> didn't know about until 2002. I'm very active in the HPS world and

> manage our HPS yahoo groups etc. Also because of HPS I have a

bleeding

> disorder, Crohn's and am legally blind.

>

> I'm 35, still working as a journalist etc.

>

> I'm also part of a pirfenidone study. Actually I go back for my two-

year

> check up next week at NIH! I'm getting nervous. Grin!

>

> It seems like I've been more short of breath lately, but my

allergies

> are really kicked up too - so I keep thinking it's a combination of

> being paranoid about my trip coming up and the allergies. Guess

we'll

> find out next week.

>

>

>

>

>

> Hermansky-Pudlak Syndrome 02/PF 06

>

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