Living with the EDS Triad: Ehlers-Danlos, POTS and Mast Cell Disease

As a child, Morgan didn’t realize it was unusual to be in constant pain. She thought it was normal for joints to constantly pop out of place, to be hyper sensitive to foods and environmental factors, and to experience constant dizzy spells with risk of fainting. As she got older and realized her body was different, doctors refused to take her seriously. They insisted her symptoms didn’t exist, were just growing pains or were all in her head. It wasn’t until she was diagnosed with Ehlers-Danlos syndrome at 18 years old that the pieces of her mysterious health issues began to fall into place. Soon she was also diagnosed with mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS). These three diseases are known as the EDS triad, and often present together for unknown reasons.

In episode 17 of the Major Pain podcast, Morgan shares what her life is like with the EDS triad. She is now 21 years old, double majoring in linguistics and comparative literature. Her trio of diseases came with many challenges, including occult tethered cord syndrome in which her spinal cord was tethered to her vertebrae, requiring surgery that resulted in cerebral spinal fluid leaks. She shares the supplements, medications and mobility aids that have helped manage her diseases, providing informative details on each syndrome. She also displays a remarkably joyful attitude towards life, refusing to let health challenges prevent her from working towards greater goals.

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