We were immediately drawn into an article written by Brooklyn-based journalist Ed Cara chronicling the experience of twin sisters — Ariella and Sarah Cohen of Philadelphia — plagued with a mysterious array of undiagnosed symptoms that drove them regularly to the emergency room from childhood. Now in their 20’s, the young women suffer from chronic fatigue syndrome, fibromyalgia and irritable bowel syndrome as well as other illnesses that the author describes are traditionally categorized as “none of the above” illnesses.
Another Frustrating Night in the ER Results in Undiagnosed Symptoms
How often have you found yourself driving to the emergency room in the middle of the night, fearing for your life, only to be categorized as none of the above and sent home with a handful of prescriptions to treat symptoms that no one can diagnose? It is beyond frustrating. For many people, it is enough to make you want to give up.
We understand how you feel. Sherri and I have been fighting that struggle for years, which is why we founded the Invisible Disabilities Association. But you have many friends here at IDA who understand your struggle and we will get through it Together, as this special song by composed by two members Mandy Harvey and Pete Ohlin so beautifully explains.
We are here to provide you with tools to help you cope, new ideas and people to inspire, and important news to keep you up to date. And we are always happy to introduce you to people like the talented staff of science and medical writers at UnDark who are searching for answers.
Undiagnosed Symptoms May Find Answers in Genetic Research
We are pleased to share Ed’s article, The Curse of a ‘None of the Above’ Disease in UnDark to show how geneticists are beginning to piece together the role of genetics, mastocytosis, Mast Cell Activation Syndrome or MCAS, and Ehlers-Danlos syndrome or EDS. Thank you to the staff of UnDark for their investigative work and the compelling way that it is presented to the public.
We invite you to learn more about what it means to be invisible no more and join our Invisible No More® campaign by sharing your experiences in any creative way you can.