EDS-ers In The News: Melanie Hartshorn

https://www.chroniclelive.co.uk/news/north-east-news/heartbreaking-setback-melanie-hartshorn-hopes-14322092

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

Fashion No Longer Hiding Disability

http://www.bbc.com/news/entertainment-arts-43130155

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.  

 

Ehlers-Danlos Society Announces $1 Million Endowment

Anonymous donor presents $1 million gift to The Ehlers-Danlos Society to jumpstart groundbreaking genomic research into genetic cause of hypermobile Ehlers-Danlos syndrome (hEDS).

The Ehlers-Danlos Society has announced the largest single donation in its 33-year history to establish an international research network of leading physicians, geneticists, and other health professionals devoted to finding the underlying genetic markers for hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). The anonymous gift of $1 million dollars, represents the largest individual gift in the history of hypermobile EDS research.

“Because hypermobile Ehlers-Danlos lacks a known genetic cause, this truly has the potential to be a transformational gift,” states Lara Bloom, International Executive Director of The Ehlers-Danlos Society, a global leader in Ehlers-Danlos research, collaboration, and support.

“Through our donor’s extraordinary generosity, we are finally able to launch a virtual ‘moonshot’ in the advancement of our understanding into the most prevalent—and often most vexing—form of the Ehlers-Danlos syndromes,” declares Bloom.

“Although our 29-year-old daughter has remarkable coping ability and good medical support, she is in constant pain. She also has fatigue, nausea, sleep disturbance, and anxiety. Everything she does or plans is affected by this condition,” emphasizes the donor.

“No others in our family have hEDS or HSD that we know, but I feel as if we all have it, because we think of her every day. At the same time, as I’ve learned about hEDS and HSD, I’ve become concerned not only about our own daughter, but also for the many people suffering from these problems around the world. The severity and prevalence of these syndromes is greatly underappreciated. It is possible that hEDS and HSD are a collection of distinct and different genetic syndromes with similar manifestations. If so, it’s important we understand this so we can pursue the appropriate research for each condition and make the best recommendations about family planning,” continues the donor.

Visit www.ehlers-danlos.com for more information. 

Happy 2018!

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!

 

Jen Ryan

Astoria, NY