Monday, April 04, 2011

Elsie's quest for a lung transplant

Long-time readers, and HPS'ers, will all know my friend Elsie. Elsie and I share having Hermansky-Pudlak Syndrome. We also share having a sibling with the disorder.

Elsie and I have been through thick and thin together.

Elsie lost her brother to the pulmonary fibrosis of HPS several years ago. He was 44 years old. Now, Elsie is fighting her own battle with pulmonary fibrosis and needs a lung transplant.

Elsie has been an active member of the HPS community and we all love her. She was the first person to sign up for the Pirfenidone clinical trial when it opened at NIH.

We tried our best to arrange our NIH admissions so we could always be hospital roommates.

She's always doing whatever she can to generate greater awareness of HPS. Even now, as she raises money to help pay for expenses not covered by insurance, she calls to let me know she wants to use her situation to also help promote awareness of HPS.

We have set up an online fundraiser for Elsie. If anyone can help, it would be greatly appreciated. Every few bucks adds up and does make a difference!

The link is:

No comments: