30. Cystinosis, on the 5th annual Cystinosis Awareness day, ft. Ashley Abedini R is for Rare

This episode is being released today in honor of Cystinosis Awareness Day today! 


Today's *second* episode features Ashley Abedini, owner of a social media and food marketing business, who has cystinosis. Cystinosis is a rare genetic disorder that affects a patient's metabolic processes, and can especially target the kidneys and muscles. It is a condition that leads to an overproduction of the amino acid cystine. Both Ashley and her older sister have this condition, and this condition is recessive. If a condition is recessive, then both parents must be carriers of the gene to pass it down to future generations of children. 

In today's episode, Ashley and I discuss the uniqueness and importance of sisterhood, what awareness means to Ashley, how fascinated we are in social media's ways of educating the public about disabilities, the Affordable Care Act, and much more!



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Cystinosis Research Network website - https://cystinosis.org

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