I have had LAM for over 12 years now. I can say I love my lungs but hate what this disease does to them.
For awhile, that distinction was hard to draw. I resented my lung disease as much or more as I resented my lungs not being able to keep up. But that was errant thinking. The fact that they lasted over 12 years & that they keep fighting now even as I wait for new lungs amazes me. I didn’t give them enough credit for their resilience & ability to keep going no matter how tough & intense the fight.
I know the women in this video. They are but a few of the many friends I have made on my journey with this disease.
In honor of the staff at The LAM Foundation who have been supportive of me from the very beginning, I’m sharing a few videos to drive home the importance of the work they do on a daily basis for me & for others who struggle with this disease.
I was very proud that Francis Collins mentioned the work of The LAM Foundation in his opening remarks on Rare Disease Day 2016.
Though I’ll be missing Lamposium this year for obvious reasons, I’ll be there in spirit.
It’s because of the support of The LAM Foundation & various women I’ve met over the years that transplant was not nearly as daunting as it could have been.
Being part of this community has helped because there are several women who do go out of their way to offer support & mentorship to others.
In addition, we are all committed not just to fundraising & support but fully vested in research efforts & moving forward progress in this disease towards more options & treatments.
It’s something to be proud of. A silver lining to an otherwise bleak looking circumstance.