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The Spoonie Struggle

Jun 16, 2021

Episode 19: Monica Michelle's Story With EDS, CRPS, MCAS, and POTS

In this episode, Monica Michelle discusses her chronic illness story with EDS, MCAS, POTS, Fibromyalgia, CRPS, and more. Monica and Jessica go on a lot of fun soap-box rants about the state of healthcare and disability. They discuss the use of mobility...


Jun 14, 2021

Episode 18: Let's Talk About Postural Orthostatic Tachycardia Syndrome

In this episode, we discuss all things POTS. POTS is a type of dysautonomia. The episode discusses the autonomic nervous system as well as the sympathetic and parasympathetic nervous systems and how they play a role in dysautonomia. Symptoms vary...


Jun 9, 2021

Episode 17: Dawn Veselka's Story of Raising a Child With Mixed Connective Tissue Disease

In this episode, guest Dawn Veselka discusses her experience raising a daughter with a mixed connective tissue disorder. Her mix is juvenile arthritis, scleroderma, Raynaud’s and dermatomyositis. Sadie’s triggers are exposure to...


Jun 7, 2021

Episode 16: Let's Talk About Marfan Syndrome

In this episode, we discuss all things Marfan Syndrome. Marfan Syndrome is a genetic condition that affects the connective tissues. Symptoms include long arms, legs, and fingers, tall and thin body type, curved spine, chest sticking out or in, flexible joints, flat feet,...


Jun 2, 2021

Episode 15: Lara Bloom's, of the Ehlers Danlos Society, Story With Ehlers Danlos and Associated Syndromes

 

In this episode, President and CEO of the Ehlers Danlos Society, Lara Bloom shares her story of living with Ehlers Danlos Syndrome. She was diagnosed with EDS at age 24, but was initially misdiagnosed with...