At the beginning of the year I was diagnosed with hypermobile spectrum disorder. Which I talk about in this post. After that I took my son to be assessed, since he has similar symptoms. We both got given an ehlers-danlos syndrome diagnosis, hypermobile type.
Robo boy doesn’t often want to be in videos, he’d much rather be behind the camera than in front. So when he asked me to make a video with him, talking about our experience I was really pleased. He’d like to help me to raise awareness, and I think he did a brilliant job.
Getting this diagnosis has changed our lives. So I hope you enjoy this video. Where we share the ways having the symptoms, and then finally getting an ehlers-danlos syndrome diagnosis has impacted on us.
I will make more content on living with hEDS. If there’s something specific you’d like me to talk about leave me a comment to suggest it.
For more information about all the types of Ehlers-danlos syndrome and hypermobile spectrum disorder visit EDS support UK.
For more information on management of hypermobile spectrum disorders watch this video I made.