A few of my friends have shared this article with me, but it took me a few days to finally read it. It’s often hard for me to read everything on EDS because the EDS Wellness’ projects have been all-consuming lately and I haven’t had much time for anything extra.
Additionally, although well-intended, there’s a lot of misinformation and incorrect medical information shared in patients’ blog posts and articles written by different media outlets – even some of the most “shared” posts and articles. It’s also hard when reading something that states that EDS is “rare.” There are rare types of EDS and maybe EDS as a whole is rare (we can’t say officially either way, and will not know until we have gained a true assessment through using proper diagnostic criteria), but having “loose joints” from a type of EDS, Hypermobility Spectrum Disorder or another type of connective tissue disorder (or disease), is far from rare. And many of these overlapping disorders share countless signs, symptoms, and additional comorbid conditions.
This article is different – it’s real, raw and truthful. It also describes exactly why professional education conferences, such as EDS Wellness’ 2017 Physicians Learning Conference is so critical.
Our community, including all EDS organizations such as EDS Wellness, need support. We all are only trying to do the best we can to help and not one organization can do all the work that is so desperately needed. Each of us has a niche, but we are so much stronger when working together.
Most importantly, funds and donations are not solely needed to support research for “a cure,” but our community is in dire need of funding and donations to help provide continuing medical education opportunities and programs, and develop patient education programs and resources that help those with EDS and related conditions live well NOW. There’s also a huge research component that goes into developing programs, resources and integrative therapies that help patients and help healthcare providers help patients as well.
I will not see a cure in my lifetime, but I can work to help people find resources and options to live as optimally as possible. And I can also help support the providers that have devoted their lives and careers to helping us.
‘The elastic girl: Living with Ehlers-Danlos Syndrome‘
“Dozens of times in a day, my bones would slip from their sockets – my elbows when I swim, my fingers when I type, my shoulders when I open a door. I almost choked to death on my own voice box last summer when I was swimming backstroke and my larynx ripped out of place. Left in its wake – a paralysed vocal cord.
Call me Humpty Dumpty for I am beyond repair. Though I am in need of a number of surgeries, surgeons do not dare to suture my widespread tears. The risk of cutting into my cursed cartilage and stitching up my slow-healing skin is too great. I bear many wounds that will never heal.
Back home I was given two choices by top hip surgeons in New York: become mummified in a body cast for six months after a risky surgery or make peace with a motorised wheelchair and morphine. I chose the latter and eventually managed to walk again.
Back on my feet, I’ve taken my act on the road to hospitals in Lebanon, Oman, India, and Mongolia. I’m breaking new ground as a medical mutant in the Middle East and Asia, sharing what it’s like to inhabit a body that challenges the authority of medicine and trespasses the conventional boundaries of pain.”
Link to full article – http://www.aljazeera.com/indepth/features/2017/05/elastic-girl-living-ehlers-danlos-syndrome-170514115635143.html
