Mighty Member since December 2017
Rare diseases affect 1:10 Americans, and 2:4 of my children: one has Beckwith-Wiedemann Syndrome (BWS) and the other (Conor) lost his battle to Primary Ciliary Dyskinesia (PCD), but his inspiration lives on. A third child has a chronic pain condition with no explanation and a diagnosis that exists only in name. Fingers crossed on my fourth - all "normal" so far, whatever "normal" means. ;) So, with few proven treatments and no cures in sight, it's my personal mission to help my children - and anyone else we can help along the way - to get the most out of what they have no matter what the diagnosis or prognosis. As a former performance athlete I had learned quite a bit about how our our physical, emotional (mindset!), nutritional, environmental and spiritual 'selves' impacted athletic performance, so my lens on helping my kids is largely about translating those learnings into approaches to help them be as healthy and happy as they can be. I research anything and everything to help me (help them) connect the dots between daily choices (what we can impact) and health or disease progression. Though I am now well-versed in positive psychology, cognitive behavioral change, integrative nutrition, patient advocacy, clinical research and a whole health educator, I find learning from others' experiences and insights to be particularly powerful to help me to help them and others when I can. I'm very thankful for The Mighty and all of you who share this journey with us! :)