I felt I needed to share a video with others that was so beneficial for me in "Coping with My New Norm" this past year. A few months ago I was having a tough time dealing with all my new diagnoses and symptoms and I felt fortunate to find this of Natasha Silverman speaking about her own journey. It encouraged me to stop focusing on what I could no longer do anymore or had to let go, but how many ways I've actually adapted to make the best of my life & circumstances.
Would love for everyone to take the time to watch or listen below:
If you are trying to get a Hypermobile Ehlers-Danlos Syndrome (hEDS) diagnosis, here's the diagnostic criteria so you know what the doctor looks for: https://www.ehlers-danlos.com/heds-diagnostic-checklist/ & do this test ->
Be aware that even if you aren't hypermobile or flexible, you can still have one of the other 12 types of EDS. A lot of unexplained pain, skin, teeth, eye, digestive or blood vessel issues are clues and are diagnosed with just a simple genetic blood test. Here's the list of those types & more symptoms besides what I mentioned.
<- This shows what doctors are able to diagnose or have expertise on EDS. A geneticist is considered the "EDS specialist," but those unfortunately are few & far between (mine just retired). I suggest finding an online support group to see if there's a name of a doctor in your area or state that others have had luck with. Mine have been a cardiac electrophysiologist & internist with EDS herself.Last, I wanted to include the most informative posts I've written so far about EDS:
#myEDSchallenge #myHSDchallenge
*Medical Disclaimer: The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. My hope is that it'll provide you direction on finding the right doctor to receive diagnosis & treatment.
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