Classical EDS, MCAS, POTS, Fibro and More: Maureen's Complex Journey

A photo of podcast guest Maureen, who lives with POTS, CEDS, MCAS, fibromyalgia and more

Maureen has lived through huge health challenges, but her outlook is still one of gratitude. After the passing of her father she has lived every day like it is her last, remembering to laugh and live in the moment. This mindset has helped her navigate a slew of health challenges.

Maureen has been diagnosed with classical Ehlers-Danlos syndrome (CEDS), mast cell activation syndrome (MCAS), postural orthostatic tachychardia syndrome (POTS), fibromyalgia and more. She is currently being evaluated for Charcot-Marie-Tooth (CMT), a hereditary motor and sensory neuropathy of the peripheral nervous system.

In this episode of the Major Pain podcast, Maureen talks us through her health journey so far. Her journey ranges from a spondylolisthesis (spinal vertebra slipping out of place) and a back brace throughout senior year of high school, to years long issues with upper respiratory problems, to a recent brain surgery for hydrocephalus (accumulation of fluid in the brain) and even endometriosis. Maureen now has a shunt surgically implanted in her brain that drains fluid to her stomach. She tells us about going to the Ehlers-Danlos Clinic at the Mayo Clinic, where she learned about the crossover between EDS and fibromyalgia. Through it all, Maureen has cultivated a wealth of knowledge about navigating the medical system, and an incredible attitude of acceptance and perseverance.

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