Fighting the Deceiving Label of ‘Rare’: Zainab Alani, Fourth Year Student at University of Glasgow School of Medicine and Rare Conditions Advocate

To mark International Rare Disease Day, we're going to introduce you to a remarkable young woman, Zainab Alani, who is not letting her challenging rare condition stand in the way of her dream of becoming a physician. After noticing Zainab’s struggles with muscle weakness and fatigue at age 15, her mother – a physician – took her to doctors advocating for a diagnosis of the rare autoimmune condition generalized myasthenia gravis (MG). Unfortunately, a series of clinicians attributed her symptoms to her menstrual cycle and other errant causes and even accused Zainab of being ‘a lazy teenager.’ “Despite having that support and knowledge behind me, these doctors were dismissing my symptoms because of that deceiving label of rare,” Zainab explains to host Lindsey Smith. Wanting to spare others from this frustrating diagnostic odyssey, Zainab turned to advocacy once in medical school and is working with her sister and others through the organization Rare Aware Glasgow to raise awareness among the general public about rare conditions and to spur the medical community to adjust its perspective. “We don't expect medical professionals to know every single rare disease, we just want them to acknowledge their existence and not dismiss them when a family member or a patient brings them up as a differential diagnosis.” In this inspiring episode in our Year of the Zebra podcast series you’ll also learn about intersectionality creating burdens in medical diagnosis and a questionable basis for patients being denied access to new treatments.

Mentioned in this episode:

Rare Aware Glasgow
The Myasthenia Medic

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