All EDS’ers Please Take Action

All EDS’ers Please Take Action

By Ellen Lenox Smith

The EDS Society has established a registry for us to use so we can get the data recorded that in time, will help truly show the numbers suffering across the world with EDS. This information will help for funding for research and help to bring to fruition, the dream we all live for, to work towards a cure.

Here is the link to the site: https://www.ehlers-danlos.com/eds-global-registry/

Taken directly for the EDS Society page:

JOIN US AND SHOW YOUR ZEBRA Pride                                   

Join the EDS/HSD Global Registry and help researchers throughout the world to advance our understanding of EDS, HSD, and related symptoms and conditions!

Each person who joins will help:

  • Map the experiences of those living with Ehlers-Danlos syndromes (EDS) and related disorders globally.
  • Enable the gene search for hypermobile EDS and hypermobility spectrum disorders.
  • Facilitate research into the frequency of related symptoms and conditions, which may be associated with the various types of EDS and HSD.
  • Discover new forms of EDS/HSD.
  • Understand the relationships between EDS/HSD and chronic pain, anxiety, and other problems such as neurological, mast cell, gastrointestinal, autonomic disorders.

Participation is free to all, with global access available—no matter where you live—and more languages available soon.

REGISTER TODAY! The Registry is GDPR and HIPAA compliant and easy to use!

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

 

 

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

Authored by: Ellen Lenox Smith

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Edward Hirsch

I would appreciate so very much of someone would contact me. It would mean the world to us

Ellen Lenox Smith

Jackie – that is the purpose for this registry to get better numbers – here in RI, we use manual PT and have similar positive results like you with that help and the offices see about 100 EDS’ers a week, and we are talking four offices!

Jackie L Cross

Given the fact that I went so long being misdiagnosed with Fibromyalgia/Chronic Fatigue/Chronic Myofascial Pain Syndrome, I wonder how many others have been misdiagnosed w/FMS as well?

I live in a small town & see a physical therapist on a regular basis who does a form of P.T. called Fascial Counterstrain, which I highly recommend for all EDS-ers/hEDS-ers & Joint Hypermobility Spectrum Disorders; it’s taught via The Jones Institute, if you want Google it, and I swear, w/o this form of treatment, I don’t think I’d even be walking today! Because my hips went subluxed by 2+” for nearly 50 years due to this misdiagnoses, there have been times that I was confined to a wheelchair, walker, crutches, canes & braces of all sorts, but this P.T. has not only given me pain relief, unlike chiropractic, acupuncture & frankly, nearly every other modality of treatment available, Fascial Counterstrain has actually helped to realign my entire body… and, IT”S LASTING MORE THAN A DAY OR TWO!!!

However, according to my physiotherapist, she treats at least FOUR EDS/hEDS-ers in a town with a population of approx 3,000 ppl which I find rather disconcerting, given the fact that EDS is considered to be a “rare disease”.

Is it possible that this disorder has been grossly under diagnosed?