Ehlers Danlos Syndrome: A Story of Resilience!

9 months ago
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On Today's Invisible Condition Show "Ehlers Danlos Syndrome: A Story of Resilience" with Jeff Pearson and the special guest Effie Siverts: Fitness Trainer.
Live at 9 AM PST | 12 PM EST
Tuesday | August 01, 2023

Effie Siverts is a 44-year-old mother of two teenage boys. From childhood, she was challenged with many unusual health conditions such as extreme flexibility (and dreams of becoming a contortionist), easy bruising, heart arrhythmia by age 6, chronic respiratory illness, rib and joint subluxations, Si joint dysfunction, GI issues, and recurrent throat abscesses. By her early twenties, doctors would joke that they should do a study of her but only provided a simple diagnosis of benign hypermobility syndrome and told her to 'live life carefully'. Daily living tasks were a struggle and pregnancies had their risks and complications. By age 38, Effie had spent 29 years in chiropractic care and 15+ years in and out of physical and pelvic therapies only to undergo major pelvic and abdominal reconstructive surgery due to hernias and prolapsing weak connective tissues. Ongoing post-operative prolapse led Effie to finally receive the diagnosis of a genetic disorder called Ehlers-Danlos Syndrome (Type 3 Hypermobility). This diagnosis connected her lifelong struggles under the umbrella of this condition - an abnormality in how her body produces collagen, therefore affecting every facet of her body. Currently, coping and management strategies are the only tools available, and now Effie is teaching her strategies to her children who are manifesting symptoms of their own.

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