It’s Pulmonary Fibrosis Awareness Week

It’s Tuesday, and we’re already three days into Pulmonary Fibrosis Awareness Week (Sept. 18 – 24, 2011). I’ve been completely swamped in HPSland (all good stuff) and I haven’t even had a moment to blog about this.

For those who don’t know, pulmonary fibrosis is a scarring of the lungs. It happens for a number of reasons. Some people get it because they were exposed to toxic chemicals or radiation. Some people get it (like me) because of a genetic mutation. And for most, they have no idea why they have it at all.

As the lungs start to scar, it makes it harder for them to expand and contract as you breathe. So, naturally, breathing becomes increasingly difficult until eventually you pass away.

I have pulmonary fibrosis as a result of Hermansky-Pudlak Syndrome or HPS.

Pulmonary Fibrosis Awareness Week is a chance for all of us, no matter why we have PF, to generate greater public awareness of the disorder. Greater awareness in general means better diagnosis, more willingness to spend money on research and to that end, eventual passage of the Pulmonary Fibrosis Research Enhancement Act.

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Living on the frontlines

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