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S2 EP07 LIVING WITH EHLERS-DANLOS SYNDROME: Sarah Hamilton's Insights on Diagnosis, Management, and Advocacy for this Rare Disorder
Manage episode 379183185 series 3486876
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Are you ready to unravel the complex world of Ehlers-Danlos Syndrome (EDS)? This in-depth discussion with Sarah Hamilton from Ehlers-Danlos Support UK is set to provide an enlightening perspective on this rare connective tissue disorder that affects roughly one in 500 people. From offering a closer look at the myriad of symptoms to unravelling the challenges in securing an accurate diagnosis, this comprehensive dialogue is designed to shed light on the often overlooked serious consequences of EDS.
As we delve further into the societal impact of EDS, one cannot ignore the inadequate government response to the healthcare needs of those affected. The narrative of EDS going undiagnosed due to scarce resources, lack of education, and a lackluster government response is sadly all too common. Yet, as Sarah and I explore, it's not just about joint issues; many individuals experience more debilitating symptoms and are left without adequate support.
Beyond the academic discourse, our conversation takes a pragmatic turn as we discuss self-management strategies and workplace accommodations for chronic illness. Sarah lends valuable insights on the importance of self-advocacy, pacing, and advocating for reasonable adjustments at work. We also examine the potential impact of initiatives like the red seeds framework, the major conditions strategy, and MSK services. If EDS affects you or someone you care about, this conversation is a treasure trove of insights, strategies and hope. Tune in, learn and lend your voice to the conversation.
https://www.ehlers-danlos.org/
As we delve further into the societal impact of EDS, one cannot ignore the inadequate government response to the healthcare needs of those affected. The narrative of EDS going undiagnosed due to scarce resources, lack of education, and a lackluster government response is sadly all too common. Yet, as Sarah and I explore, it's not just about joint issues; many individuals experience more debilitating symptoms and are left without adequate support.
Beyond the academic discourse, our conversation takes a pragmatic turn as we discuss self-management strategies and workplace accommodations for chronic illness. Sarah lends valuable insights on the importance of self-advocacy, pacing, and advocating for reasonable adjustments at work. We also examine the potential impact of initiatives like the red seeds framework, the major conditions strategy, and MSK services. If EDS affects you or someone you care about, this conversation is a treasure trove of insights, strategies and hope. Tune in, learn and lend your voice to the conversation.
https://www.ehlers-danlos.org/
Hi listener. I thought you might enjoy Don Anderson's podcast. Missing Pieces - NPE Life is a podcast that curates stories of and about people who find out, usually through a home DNA test, that someone in their family tree isn't who they thought. They also tell stories of adoptees who've found lost family, or are looking. The host, Don Anderson, found out in 2021 that his dad wasn't his dad. It changed his life. NPE stands for Not Parent Expected or Non Paternity Event.
https://www.angelawalkerreports.com/
章
1. S2 EP07 LIVING WITH EHLERS-DANLOS SYNDROME: Sarah Hamilton's Insights on Diagnosis, Management, and Advocacy for this Rare Disorder (00:00:00)
2. Understanding Ehlers-Danlos Syndrome and Improving Diagnosis (00:00:06)
3. Inadequate Government Response to Healthcare Needs (00:09:22)
4. Managing Hypermobility Disorders (00:14:17)
5. Work Accommodations for Chronic Illness (00:19:05)
6. Investment in MSK Services Strategy (00:26:17)
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