Since completing my first run of Ask Addi, I have turned to raising awareness for the disability that affects me and my child, hypermobile Ehlers-Danlos Syndrome (hEDS). This genetic disorder weakens the connective tissue in the body, causing myriad effects. This limited video series, filmed on the days I have to call off from work due to hEDS symptoms, examines those effects.
Hello, humans. I’m Addison Smith, just Addi, and welcome to my bed.
I wish this was a sexy video series, but this is where I end up spending a lot of my time. You see, I have a disability, a genetic disorder called Hypermobile Ehlers-Danlos Syndrome, or h.E.D.S. or hEDS, and hEDS ends up putting me in bed, sometimes for days at a time.
And that’s the clever origin of the name of this video series. “In Bed with hEDS.” hEDS is a connective tissue disorder. That means my body does not make connective tissue correctly, and connective tissue makes up about 80% of the human body, so it can really screw me up in lots of ways.
My form of EDS, the hypermobile type, concentrates the damage it does to the joints, making them really loose and but also affects the GI tract, skin, nerves.
Yeah, it’s a lot.
Then those effects have their own effects, like dislocated joints, neck vertebrae slipping and pinching nerves, headaches, gastric issues, poor coordination, and . . . and a lot.
It’s just a lot.
I want this series to educate people about hEDS, and I’ll be using myself as a case study. I believe people should know about this disorder, and I have a way of showing the effects of one’s collagen not being strong enough. My own story.
I’ll be talking about not just the symptoms and the pain of hEDS but the consequences, the financial, emotional, social, and even existential consequences. I’ll also be talking about the knock-on effects on one’s family.