Miscellaneous
Meet Hannah Harrell, a 26-year-old self-advocating patient of Ehlers-Danlos syndrome or EDS. While EDS is considered a rare disease due to fewer than 200,000 US cases per year according to Mayo Clinic, EDS communities believe it is often misdiagnosed and that its prevalence is greater than currently known. EDS is a group of genetic disorders that affect the connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. The symptoms of EDS can range from mildly loose joints to life-threatening complications, and often causes lifelong chronic pain. While there is no cure for EDS, legal drugs can help manage and treat symptoms to prevent further complications. However, finding a diagnosis and navigating the legal drugs available on the market for EDS patients often presents its own set of challenges. Because doctors are often not familiar with EDS or the side effects that affect EDS patients differently from other non-EDS patients, troubleshooting medications has been another layer of frustration for Hannah and her family. According to www.ehlers-danlos.com, similar to a zebra who’s stripes are unique individual to individual, those with Ehlers-Danlos Syndrome each have a unique struggle with the disease, making no clear path for consistent treatment. . The EDS community adopted the zebra as its mascot because “sometimes when you hear hoofbeats, it really is a zebra.” Whereas, medical students are taught “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, it is not the rule to pick a more unusual or surprising diagnosis. As a result, EDS patients spend years pursuing a correct diagnosis, often with legal drug treatment that may not be best for their disorder. EDS advocacy groups are currently working towards awareness and a time when medical professionals can more easily recognize EDS in their patients. More on Hannah: Hannah lives in Charlotte, NC but grew up in Austin, TX and Shelby Township, Michigan as the eldest of three daughters. She was homeschooled from the age of seven and loved to write and read about medical history. Surrounded by other family members who were “bendy and clumsy,” Hannah recalls seeing her mother, grandmother and great aunts often wrapped in ace-bandages in her early childhood. Diagnosed with narcolepsy by the age of eighteen, Hannah spent the next six years of her life seeking answers while battling with her health. She, her mother and two younger sisters were all diagnosed with EDS in March 2018 at Baylor College of Medicine in Houston, TX. As a result of her journey, Hannah advocates for awareness of poorly understood and undertreated diseases. Hannah’s soapbox (ENFP) personality has proved to benefit her in her passion for chronic illness and EDS patient advocacy and awareness. She helps operate several EDS support groups both online and in the Charlotte, NC area. Hannah’s believes that the best help a chronic illness patient can find is to educate and advocate for themselves to the best of their ability. Other resources include www.practicalpainmanagement.com. To join Hannah’s Facebook group, go to; https://www.facebook.com/groups/NCCEGS/?ref=share. For additional resources on different types of EDS and genetic differences and markers, go to; https://themighty.com/2019/06/what-is-ehlers-danlos-syndrome/. This episode edited and produced by Margaret Beveridge.