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
Beginning to see more and more stories in the media about differently-abled inclusiveness in fashion. Nice piece here from the BBC about London Fashion Week, featuring Clara Holmes, a fashion blogger with disabling EDS. NY Fashion week also made a point this year to feature differently-abled bodies.
First Ever Models With Disabilities Grace The Catwalk In New York Fashion Week
There is also an up-and-coming model with Classical EDS, Sara Guerts.