Welcome to all the newbies I don't know yet

[Guest guest]

A quick welcome to all the newbies I haven't gotten to meet yet. My name is . I am 36 years old and was diagnosed with PF at 33. Thankfully I've been pretty stable every since. I have Hermansky-Pudlak Syndrome which is a rare type of albinism that causes PF, as well as a bleeding disorder, legal blindness in most, and for some of us (like me) Crohn's-like digestive problems.

Hello and welcome!

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!

[Guest guest]

Hi ,I had just read all you did since you last posted and it wore me out just thinking about it. You're an amazing inspiration to be so politically active and learning and teaching too. I'm still trying to learn everything I can to help my doctor figure out what happened to me as none of the individual diagnosis descriptions in the ILD category really make any sense. I'm still contemplating the VATS but am not crazy about doing it. Peggy E (53 y.o. ILD 2008, probable GERD 2009)Subject: Welcome to all the newbies I don't know yetTo:

Breathe-Support Date: Thursday, July 2, 2009, 7:59 PM

A quick welcome to all the newbies I haven't gotten to meet yet. My name is . I am 36 years old and was diagnosed with PF at 33. Thankfully I've been pretty stable every since. I have Hermansky-Pudlak Syndrome which is a rare type of albinism that causes PF, as well as a bleeding disorder, legal blindness in most, and for some of us (like me) Crohn's-like digestive problems.

Hello and welcome!

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!