For the past two years, a group of experts, advocates, and patients have been gathering as an ad hoc committee of the National Academies of Sciences, Engineering, and Medicine (NASM), per the request of the U.S. Social Security Administration (SSA). The culmination of this collaborative and Herculean effort has resulted in a first-of-its-kind publication: “Selected Heritable Disorders of Connective Tissue and Disability,” a consensus study report.
What does this mean and why am I so excited?
This committee reviewed several heritable disorders of connective tissue (HDCTs), primarily Marfan syndrome and the Ehlers-Danlos syndromes, and created an all-encompassing report about the current state of the diagnosis, treatment, and disease course of the selected conditions. The authors took into account patient experiences, published evidence, and supplied their own expert judgment. One of the major goals of this publication is to make the disability application determination processes for folks with these HDCTs easier.
This means members of our community will finally be able to point to a dedicated publication and say, “Here’s what my condition entails, some of the challenges I face, and how I need you to help me.” Our experiences have always been legitimate. Whether or not they are heard is another story. This book, which will command attention and respect from the medical profession and the federal government, can help there.
Of course, as someone living with Ehlers-Danlos syndrome, I was thrilled to see this publication. I was even more thrilled to have the opportunity to speak with one of the authors of this publication, world-renowned Ehlers-Danlos syndrome expert and neuro-ophthalmologist Dr. Eric Singman, MD, Ph.D.,
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