I first suffered symptoms of hypermobile ehlers danlos syndrome (hEDS) when I was eight. I was finally diagnosed aged 41. This is my story, a lifetime of pain and other health issues with no answers and no solutions.
How I got my diagnosis and the steps I’ve been taking since then to improve my health and quality of life.
This is a video I made about managing the symptoms of hypermobile spectrum disorder
This is the Ehlers Danlos society who are dedicated to improving the lives of those affected by hEDS HSD and other related conditions
Aloha Ella, I may have Autism, so I was watching your videos. I have Dercum’s Disease DD, Asthma, Diabetes from pancreas removal, & possible Ehlers Danlos. (Diagnosed by Dr Karen Herbst.) My 3 children have Autism & dysgraphia they are adults now. They were diagnosed about 2002. My oldest has a mood disorder too & he lives with Dad. My other two are m to f. My middle daughter has possible DD . My youngest at 22 has probable Ehlers Danlos but there are no specialist around. She has scoliosis & social anxiety.
I wonder if there is a connection between any of these conditions?
It has gotten challenging with the kids through teens & young adult changes. Transistions are rough!
I think you and your family are amazing! Take care!