Meghan Bayer, 2022 #RAREis Scholarship recipient, lives with pediatric-onset stiff-person syndrome, which means she deals with persistent muscle spasms, dislocated ankles and an inability to move her toes voluntarily. Severe breathing difficulties caused by the muscle spasms have required her to be on a ventilator dozens of times and have impaired her stomach and intestines to the point she requires a feeding tube.
She also has hypermobile Ehlers-Danlos Syndrome, which causes collagen deficiencies, leading to joint dislocations, frequent sprains, fatigue and organ dysfunction.
Then there’s mast cell activation syndrome, which causes severe allergic reactions to things like hot or chlorinated water, sweat, heat and cold. She’s also hypersensitive or allergic to smoke, fragrances and several medications.
And on top of all that, she lives with Type 1 diabetes, autoimmune inner ear disease, tethered cord syndrome, autoimmune polyglandular syndrome (Type 1), complex regional pain syndrome (Type 1) and about three dozen other diseases with varying degrees of rarity.
None of it has stopped her from maintaining a full and active life. Thanks to her own determination, plus cochlear implants, the feeding tube, an insulin pump and an orange wheelchair she has named “Nemo,” Meghan now keeps up a schedule that would be considered more than a full slate for anyone: master’s degree classes and internships, disability rights advocacy, speaking engagements and even competitive taekwondo.
Her engine simply doesn’t stop. And for the last year, a #RAREis Scholarship made possible by Horizon Therapeutics has been part of the fuel.