In April, Lauren took a much-needed rest due to health flares, relying on her loyal listeners for their understanding while she briefly stepped back to give herself healing space and to undergo health testing. While difficult to do … for two years she has posted a new episode every week (and some weeks, two!) … as you all know so well, chronic illness makes its own unpredictable demands on Spoonies.
But it was great to be able to talk in April with a truly calming influence: Alexa Chronister.
Diagnosed as a child with hypermobility syndrome (frequent falls, sprains and strains; joint pain; frequent dislocation of joints; poor balance and coordination, among other symptoms), which developed into chronic pain, Alexa was finally diagnosed with Ehlers-Danlos Syndrome (EDS) and POTS.
A recent college grad, we were so impressed with the maturity Alexa displays in talking about her arduous journey and her empathy with doctors who try to understand what is going on, but often just can’t grasp it. Because there are no specialists for EDS, its patients end up seeing a range of doctors, many of whom have never seen or have barely heard of the syndrome.
“I’ve certainly had my angry moments, my frustrating moments,” Alexa admits. “I’m not gonna say that I don’t, or that it still doesn’t happen — because it can be the worst feeling. But I think finding a voice is so powerful in calming that down. Feeling like I can get my point across better when I’m coming from that calm, informed, genuine place. To improve not only my experience, but the experience of the patients these doctors have yet to see. Which is really important to me, too.”
In 2016, she created the Cards For Warriors program, gathering volunteers to send handmade cards of encouragement to chronic illness warriors across the globe, reminding them they are not alone. This worthy effort led to the formation of Fight Like A Warrior (FLAW), a non-profit working to unite, empower, and advocate for those fighting life-altering health conditions, globally, and for which she won a 2019 WEGO Health Award for Best In Show: Community,
Alexa has a passion for working with individuals and communities to advance policy, advocacy, and entrepreneurial efforts, particularly within healthcare, focused on improving access and reducing inequity. She now plans to attend law school to pursue a career in health policy. Meet this worthy warrior …Episode 125!