I’ll be posting a bit more often this month because I want to support the first WorldWide LAM Awareness Month.
Tag Archives: medical research
Draft of FDA Testimony
Representing the TS Alliance & The LAM Foundation both when it counts in research & behind the scenes has been something I have championed for a very long time as my health has allowed.
This Slideshow Speaks For Itself
To see the exciting possibilities of 3D printing in medicine, check out this cool slideshow from the Cleveland Clinic:
From NHS Trust: Transplant Patient Comes Face To Face With His Old Heart
This article really struck a cord as I read it. It reminds me of the reasons why I filled out a consent form to donate my old lungs to LAM research & also at least get tested to see if any of my other organs or tissues could be donated to someone who needed them.
My Dry Run Was Also A Donation Dress Rehearsal
My dry run on July 2 was also a good test to figure out the process of notifying my LAM research team about donating my old lung tissue & organs to research into my rare diseases.
WorldWide LAM Awareness Day
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.
Important Finding in LAM & TSC Research: Part II
I posted the first half of these questions for the researchers on this study yesterday. Here are the rest of the questions that came out of conversations after some of my friends & I broke down this research finding.
Important Finding In LAM & TSC: Part I
After I was made aware of this finding & commented on it, Dr. Chada & Dr. D’Armiento graciously gave of their time to break down the science for me as well as answer a few questions I had posed with a series of emails & a few calls.
This is the first half of the questions I posed to them after reading through the research paper, picking it apart, talking with a few friends & leaders to connect a few dots, & then comparing my prior learnings in research to date to connect the dots to this finding.
I hope that the introduction I posted yesterday was helpful in simplifying some of the terminology.
For ease, I tried to group similar questions & responses together. I had at least 16 questions that came out of this study. So the first half of those are below. The rest will follow tomorrow.
Potentially Imporant Finding in LAM/TSC Research
I woke up to a pleasant surprise this morning. I have to thank my tweetchat & Twitter friend, Joe Babaian, for passing along this lead.
This release is very preliminary. That said, I found it interesting as I have always felt (as have others) that it wasn’t just the MTOR pathway alone that was at work in both of my diseases (LAM & TSC). This seems to confirm that theory.
I learn something new every day. I saw this news piece from Lung Disease News & found it highly interesting. Continue reading