Skip to main content

Living on the frontlines

Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life

Search This Blog

Hundred People Search Update

November 23, 2016

Happy Thanksgiving everyone! We just added a new HPSer to the registry. That puts us at 78 to go on the Hundred People Search.

Get link
Facebook
X
Pinterest
Email
Other Apps

Labels

HPS Network News

Labels: HPS Network News

Get link
Facebook
X
Pinterest
Email
Other Apps

Comments

About Me

Heather Kirkwood: I’ve kept a journal since I was about 13 years old. In it, I recorded everything around me fit for public consumption (you never know who might find a journal.) I recorded the day-to-day events of life, commentary on world events, and the rites of passage I experienced growing up. As an adult, however, life suddenly didn’t inspire entries – it got in the way of them. Once grand ambition faded into the pragmatism of trying to pay the bills. Then, in 2002, I learned I had Hermansky-Pudlak Syndrome, a rare type of albinism that causes a myriad of other health problems including a bleeding disorder, colitis and pulmonary fibrosis. At 29, I learned most people with the type of HPS I have pass away in their late 30s to early 40s. Suddenly I wanted to journal again. I wanted to leave a record of what had happened to me and what I’d learned from it. Yet writing it down has often been too painful. Here is my attempt to reconnect with my old self. I don’t want my life to be defined by HPS. I want to think about the everyday occurrences of life. At the same time, however, HPS is constantly teaching me things I want to share.

Archive

November1
December1
July1
June3
April1
March1
January2
October1
September1
August2

Show more Show less

Labels

Advances in science and medicine
Book Reviews
Chediak-Higashi Syndrome
coping
Ferry photos in Seattle
Finley
health update
hps
HPS 101
HPS Fundraising

HPS Network News
lung transplant
movie reviews
My diagnosis story
Other
Personal Health
Personal life
photo
photos
ping
recipes

Show more Show less

Report Abuse

Powered by Blogger