Halfway through 2019 already and we have featured 28 guests! We’re overjoyed with the support you guys have given Uninvisible Pod and are excited to be writing the June 2019 edition of the Monthly Round Up blog.
Who did we talk to in June? We talked to P. Brendon Lundberg, founder of Radiant Pain Relief Centres, about chronic pain therapies; T. Sydney Bergeron Mikus about the difficulties of living with tick-borne diseases and Lyme; Lara Bloom, Executive Director of the Ehlers-Danlos Society, about streamlining EDS protocols in medicine; and Eric about living with cystic fibrosis — especially living past what is considered average CF life expectancy.
It’s amazing how many of us living with invisible and chronic illnesses feel that we have to be our own advocates. With our June guests, we unpack in several ways the role that fatigue plays in chronic illness, and how difficult this can make it to constantly advocate for ourselves. We want to let you know that you are not in this by yourself. Together, we have a voice.
Ready to talk? We’re ready to listen. Contact Univisible Pod and let’s share your story.
Brendon Lundberg is the co-founder of the Radiant Pain Relief Centres in Oregon. The centres use an FDA-approved and Mayo Clinic-tested treatment for chronic pain called Scrambler Therapy, which targets the brain’s response to pain in the body and aims to retrain its feedback loop by encouraging neuroplasticity. Brendon combines his mission to change the way chronic pain is treated with deep experience in healthcare management and business development; he and his co-founder, David B. Farley, M.D., released their book, Radiant Relief – A Case For A Better Solution To Chronic Pain in 2018.
T. Sydney Bergeron Mikus is an award-winning writer, artist, designer, model, and activist based in NYC. They live with TBD (tick borne disease), including Lyme, Bartonella, and ehrlichia, as well as POTS (postural orthostatic tachycardia syndrome). They create work driven by healing advocacy, art, and narrative as tools for change, and self-care as disruption. Sydney is a queer, nonbinary femme living with chronic illnesses that cause intersystem disabilities.
Lara Bloom is the international Executive Director of The Ehlers-Danlos Society. Finally diagnosed with EDS at the age of 24 (after many years of chronic pain and frustration), she channeled her healing into patient advocacy. Her job is to raise global awareness of rare, chronic, and invisible diseases, with a focus on the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD), and related disorders. Lara manages coordinated medical collaboration, raising funds for research, and focuses on global progression, education, and awareness.
Eric is originally from Philadelphia, PA, and was born with cystic fibrosis. Diagnosed at the age of 1, his original life expectancy was between 10-14 years. As advances in medical treatment have moved forward, so has his life expectancy … so much so that Eric has now, at 41, surpassed his doctors’ hopes. He moved to Southern California as an adult to take advantage of the statewide Genetically Handicapped Persons Program, which enables him to get his treatments and medications fully covered by insurance.