Thursday, May 15, 2014

Very quick update – off to the American Thoracic Society

I promised I’d try to update the blog more often to keep everyone in the loop as I just can’t seem to reply to everyone when I feel I need to do it! For the next week I’m taking the week off from planning my move (well, sort of).

For months I’ve been planning to attend the American Thoracic Society meeting in San Diego. I’ve attended this meeting for years and know many people in the ATS, both physicians and ATS staff. Honestly, when I was told I needed oxygen, I thought about not going this year. I thought about it for about five minutes. Grin!

I decided that even with all of the chaos and haste going on in my life, I HAD to be at this meeting, even more so than previous years.

First, it is an important year for Hermansky-Pudlak Syndrome at ATS. The full results of the Intermune Pirfenidone trial will be announced. Other potential drugs in the pipeline will be discussed. It’s a strategically important year to lay the groundwork for the next phase of the HPS battle, not just my own.

Second, this may sound silly as I know our researchers understand the urgency of our situation, but there’s nothing that says urgent like this darn tubing on my face. It’s visible! It’s tangible. I need a treatment now! And, as I will be driving home at every opportunity, so does the rest of the HPS community.

Lastly, and this is a more selfish reason, there are people attending this meeting who could be of great help to my personal journey. I am so lucky to have a chance to meet them and speak with them in person. I’d be a fool not to take advantage of it.

Honestly, I feel a little guilty about the last part. It’s something not everyone gets a chance to do – and everyone deserves that chance. The thing is it is impossible to take everyone to ATS. I hope that by advocating for my own needs, I’m just paving the way in some manner for everyone else. We ALL need a CURE!!!!

1 comment:

Teacher310 said...

Heather, your courage and commitment to finding a cure in the face of your impending transplant is inspiring. Every connection you make, every word you write as evidence of your experiences as an advocate and patient are valuable to the broader HPS community and the people who love and support someone with HPS. May you continue to be inspired as you write your journal because it inspires your readers!
Best wishes.