October 11, 2017
By MATTIBETH NELSON
Ehlers Danlos Syndrome is a connective tissue disorder that can affect any part of your body. The comorbidies that come with it are growing each year. There are some that are too non specific to pin down so we are depending on research to connect all the dots. In medical school doctors are taught when you hear hoof prints to think horse not zebra making someone with EDS a medical zebra.
As someone who loves her hometown I know our doctors are up to the challenge of learning more about EDS. I have been to the past two learning conferences on Ehlers Danlos Syndrome and have discovered a few things:
* 1. The number of doctors familiar with E.D.S is so scarce that on average people go 5 or more years before they get a diagnosis.
* 2. These patients often have to travel for hours and feel like giving up before having their symptoms are validated.
* 3. The hopes of the new criteria is to serve as a starting point for the EDS (zebra) community.
* 4. This criteria will change as more research is done but we need your help.
On March 15th 2017 there was new criteria published for the diagnosis of EDS specifically, hEDS. Although they are searching for the gene mutation at this time, it has not been found so they are relying on a clinical diagnosis. We want to stick local so I implore you to please take the time to read about hEDS and help us stay local.
A program sponsored by EDS awareness.com is now offering free C.M.E.’s for medical professionals. You can sit at home on your computer and get all your C.M.E.’s for free. If that is not enough to interest you then how about this? The number of diagnoses in Louisa is going up and familiar doctors are so full that they are turning away patients.
Our local dazzle (group of zebras) consists of 15 members that have been officially diagnosed to include:
Donna Brady and her daughter, three of my children: Madison, Emma, and Mackenzie Nelson. This list also includes myself now. All residing in Louisa/Prichard area.
There are several in our group that suspect it as well but need more local medical professionals to understand it. Come grow with us. This program is aimed at just the basic explanation of E.D.S. and symptoms that go along with it.
For more information you can go to www.Ehlers-Danlos-CME.org
