Ehlers Danlos Syndrome is everywhere!
I’ve run across two Youtubers who have EDS, which is always interesting, because all of our experiences with this disorder are different.
The first is Jessica Kellgren-Fozard, who has quite a few complications in addition to having to deal with the British healthcare and disability system. (Did you know, that cohabiting or getting married reduces their benefit drastically? This one ticked me off!)
She’s charming and graceful and has amazing hair and outfits, and she’s just plain fun to watch.
The thing I like most about her (other than the accent!) is that she presents so normally and maintains such a cheerful face (something I wish I could do better!) but then turns on the sharp tongued sarcasm that makes me laugh.
She does have a caregiver who helps her in addition to her wife – her hands are so messed up there is little she can do with them, and she has a snarky video about that. She’s also deaf, has IBS (probably EDS related), and has a nerve sheath disorder which makes things harder.
There’s a funny video where she explains how her wife saved her life. The first time she was over, she opened Jessica’s fridge and found nothing but leeks.
Yes. Leeks. She was apparently living off of nothing but leeks because her gut was so messed up.
Sound familiar?
She is supported entirely through Youtube, Patreon, and the like, all of which together allow her to be a partner to her wife and not have to live with feeling like a dead weight, something that I’m a bit jealous of. Especially lately where I’m struggling with finding a job!
The second is Amy Lee Fisher who is far, FAR sicker than I am. She puts a cheerful front on it, but she has a lot of difficulties.
I occasionally have the issue where my guts forget to gut – the muscles stop contracting, and everything backs up, I end up puking because nothing is going through, and I have to take a med to wake it up again.
Hers shut down and never woke up again.
This is the sort of nightmare situation that I worry about.
She has a variety of EDS related videos, as well as some relating to her eating disorder. But she also has some fun videos of the sort you would normally expect on a Youtube channel.
I’ve had a lot of fun watching both of them, and I strongly suggest you take a look if they’re at all interesting to you.
Do you know anyone with EDS? I really like being able to watch someone who goes through the same types of things I do. What type of Youtube videos do you like to watch? Inquiring minds want to know! *smile*
I only recently found out that a friend of mine has EDS. I had no idea until she mentioned she was having to walk with a cane that day, and when I asked if she’d hurt herself, she told me she had EDS. I know so little about it, now I’m reading everything I can about it.
That’s really nice of you! There’s a lot of conflicting information because each person has oddities and their own presentation with it. Almost anything can be effected. And silly things like fainting when I stand up too quickly. The bones in my ear can shift so sometimes I lose hearing in one side for a few minutes. And I have to have my eye doctor watch for aneurysms in my eyes. It can be ridiculous what’s involved.
If she has type IV vascular there are additional issues and some precautions she should take.
One place to look is: https://www.ehlers-danlos.com/what-is-eds/
There are advantages though – I’ve had a couple falls and a nasty car acident where I should have broken something but dislocated and bent instead of breaking. Not great but better than a break! 🙂