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
Hello fellow zebras!
My name is Jen Ryan (hEDS) and Kurt has kindly “turned over the keys” to the site so that we can begin to revamp it.
The idea is to provide a steady stream of articles, information, links — and anything else we can thing of — to help you live better in NYC with Ehlers-Danlos Syndrome.
My four-year journey since finally being diagnosed with hEDS has been equal parts enlightening and taxing. We live with a difficult, intractable, mostly untreatable condition that manifests itself differently in each one of us. I am a member of every EDS message board or forum that the internet has to offer, and the vast majority of posts from people with EDS read like this:
- Doctors don’t listen to me.
- Nothing helps my pain.
- I am miserable and alone.
- Nobody believes me when I tell them I’m sick.
These are all unacceptable to me. Nobody with EDS should be miserable, alone, in pain or without compassionate care.
We are very lucky to live where we do. There are a lot of clinics and doctors in New York City who not only treat EDS, but who are willing and interested in learning about it. I have been in NYC emergency rooms where once I told the staff my diagnosis, every nurse, intern and resident came to see me, touch my skin and ask me questions. I have been helped by doctors who didn’t know what EDS was but ended up studying it — providing novel and helpful treatments. I have talked with fellow Zebras about their experiences and found a deep camaraderie through our similar struggles.
So lets do this together. Lets fight together for better understanding and care of EDS in New York City. We owe it to ourselves and to each other to make sure nobody with EDS suffers. We deserve happiness and good health. I promise that despite our unique challenges, both are possible.
Please check this space often for articles, links, new speakers for our lecture series and meet-ups. I look forward to the journey with all of you!