The Rare of the Rare: Betty on Living with Seronegative Myasthenia Gravis

Betty Ajuewitsi
2026 Infusion Access Foundation Champion
A story about living with Myasthenia Gravis
Betty was once the “anchor” of her large Nigerian American family, a firstborn of 17 siblings who moved through the world with quiet confidence. As a dedicated educator and facilitator, her voice was her power—until the summer of 2011, when Myasthenia Gravis (MG) began to pull the world out from under her. What started with drooping eyes and exhaustion eventually led to a total body shutdown. At her worst, Betty was wheelchair-bound and bedridden, so certain her life was over that she wrote goodbye letters to her children.

Betty’s path to a diagnosis was a “nightmare” of being dismissed by emergency room staff who told her the symptoms were in her head. It took a life-threatening respiratory crisis for her to finally receive the correct diagnosis and her first IVIG (intravenous immunoglobulin) infusion. For years, she carried a “drug bag” of pills that caused more side effects than relief, until she successfully advocated to stop the oral medications and rely solely on IVIG maintenance. This decision was a turning point; by 2017, Betty didn’t just return to the classroom—she returned to a life filled with travel, dancing, and a renewed sense of faith.

Today, Betty is a published author and a mentor who embraces her “invisible disability.” She is particularly passionate about breaking the silence and myths surrounding rare diseases in African and Nigerian communities. While she still faces the annual stress of Prior Authorizations and the shadow of Step Therapy, Betty refuses to be defined by her illness. She views her MG as a “living partner” that has taught her to live more slowly and love more deeply, proving that life after a diagnosis is not just possible, but beautiful.

"My journey with Myasthenia Gravis is more than a story about illness; it is a story about faith, resilience, and rediscovering purpose when life takes an unexpected turn. I want others living with invisible conditions to know they are not alone. I also want to break the silence and the myths that surround rare diseases, especially in Nigerian and African communities, where illness is sometimes misunderstood or hidden in shame." - Betty