Somehow saying “Happy Rare Disease Day” doesn’t quite have a ring to it, does it?
Thanks to IOWA STATE UNIVERSITY for this great piece on a student with hEDS. A good one to share with friends, colleagues and family to bring some light to what we EDSers go through every day — not just on Rare Disease Day. If only!
I have been following Melanie Hartshorn’s story for quite some time.
She suffers from hEDS as well as severe CCI (cervial-cranial instability). Melanie has lived bed-bound, unable to lift her head due to constant dislocations. This has not stopped her. Melanie recently graduated from college, having taken all her classes and exams lying on her stomach on a gurney or bed.
Melanie had spinal fusion and Chiari surgery a few months ago in Barcelona. Although she had hoped to spend more time upright, has hit a setback with her physical therapy allocation funds and is now only able to spend a few hours upright daily.
Melanie is an extraordinary woman who has been very vocal and visible about about EDS in the UK media. She is an example of what all of us can accomplish despite our limitations. Please consider contributing to her Go Fund Me, if you are able.
To donate, visit www.gofundme.com/melanie-s-mission
Dr. Norman Marcus launched his eponymous Pain Institute in 1998. He is the pioneering author of two books: Freedom from Pain and End Back Pain Forever. A past president of the American Academy of Pain Medicine, Dr. Marcus is a member of five professional societies and has presented over 100 lectures about diagnosing and treating pain to audiences throughout the world.
In 1977, Dr. Marcus co-founded and directed the first pain center in NYC at Montefiore Hospital. He went on to establish and direct pain centers at Lenox Hill Hospital in NYC (1983-1998) and The Princess Margaret Hospital in Windsor, England (1997-2001). Currently he is both the Director of Muscle Pain Research and an Associate Professor of anesthesiology and psychiatry at the NYU School of Medicine.
Dr. Marcus is a media favorite having appeared on The Today Show, CBS This Morning, Good Morning America, Fox & Friends, and The Early Show.
April 20, 2016, Dr. Marcus gave a presentation to our group.
Download the presentation here.
The video had some issues however the 105 slides from the presentation cover pretty much everything he said.