One might say I'm extremely passionate about creating the change necessary for people with Lyme disease to obtain an accurate diagnosis, essential care, and long-denied justice. I might say I'm obsessed with it.
Nine years ago my life morphed into something I never could have seen coming. Although I had struggled with "mystery illness" for more than a decade after a pretty obvious tick-bite-event, I had no desire to dive into the "controversy" of Lyme. It was hard enough getting out of bed every day, pursuing a meaningful career, maintaining relationships, having a life--all while constantly plagued by crushing fatigue, mental exhaustion, chronic pain, and a mixed bag of daily symptom delights. My motto was "just keep going."
So I did, until I couldn't. And then, suddenly, it wasn't about me any more. I knew there was a chance my daughter could have contracted Lyme from me in utero, but the day she started having migrating joint pains all over her body was the day I knew nothing would ever be the same.
I'm not a fan of the word "journey" as a metaphor. Maybe that's because of how royally screwed up everything is in the Lyme world. How can you know the evil that created (and perpetuates) this horrific situation for millions of sufferers and slap a happy-face label of "journey" on the process of discovering how deep that evil really goes?
When my daughter started exhibiting symptoms suspicious of Lyme disease, I knew I had to get her tested, first of all. But because I had avoided all the politics, controversy, and drama associated with Lyme, I had no idea what to do after that. So I dove right in to the science. I found people who could help me learn how to read journal articles and how to search PubMed. I devoured all the data I could find. Then, I wrote out what I understood to be the disease mechanism--because I'm a strong believer that you don't truly understand something if you can't explain it to someone else.
I am happy to report that my daughter is doing well, and I'm thankful every day for that blessing. And as much reason as that gives me to "pay it back" to all those who are not as fortunate, that's not what drives me.
What drives me is knowing exactly what steps those crooks took to whitewash the disease and having all the documents to prove it.
The time and space I've traveled since getting my daughter tested; the walls I've scaled; the barriers I've smashed; the discoveries I've made...that's no journey. It's a damned odyssey into a quicksand-filled hall of mirrors. With snakes. And bear traps. And still, I'd do it all again. I can't stop.
This deeply ingrained need for justice is what defines our mission at TruthCures. Get to the truth, and there will be a cure. In the last couple years, with my dear friend and colleague Lahra, partner in Lyme crime fighting, we've made huge progress. Each small success is a building block for another. And another. We are relentless.
Yet...another tick season is upon us, and we're still beholden to the bogus two-tier diagnostic method. We told the FDA every single one of the tests they've cleared is based on a manipulated standard and needs to be recalled. Supposedly there is an investigation taking place. This is our primary focus right now. Hold everyone to account, and hit them from every angle.
We are proud to do this important work and we thank you, sincerely, for your support.
Commentaires