May is Ehlers-Danlos syndromes (EDS) and Hypermobility spectrum disorders (HSD) awareness month. I thought to make a little post about it, especially because this topic has been in my mind more than usual this year. I have HSD myself and I don't (at least currently) meet the criteria for Hypermobile EDS. I keep seeing only EDS mentioned in the internet but reality is that not everyone who has hypermobility issues meets the strict criteria for EDS. HSD keeps getting overlooked and I felt for the longest time like I didn't really have anything wrong since it's not EDS. That's not true, and joint problems in HSD can be just as difficult as in EDS.
I physically over exhausted myself at the beginning of the year and I started to have pain all over my body. First it was my knee and big toe joint, then my hip, then my fingers, then my thumb dislocated, then my lower back started hurting... I haven't been able to exercise much and I'm totally out of shape since something is always hurting. I went to a doctor who once again diagnosed me with hypermobility syndrome which is especially severe in my fingers. I've been seeing specialists this year and got custom made insoles (which have helped a lot!) and after a long process I got ring splints for my fingers just yesterday.
They look like cool jewellery and I'm very excited about them! They prevent my fingers from hyperextending which can easily lead to osteoarthritis. My fingers have been hurting even when I type or use my phone. It affects my job and obviously quality of life too. I'm getting used to these now and I should start to use them daily. People will probably be curious about them when I go out wearing them. I don't think I've ever seen someone wear these IRL either.
You can learn more about HSD and EDS on The Ehlers-Danlos society's page. You can also donate to research on their page. There's still a lot we don't know about this syndrome, and even the diagnostic criteria will likely change in the future. It's also very interesting how HSD and EDS are much more common with people who have ADHD and/or Autism. I'm very curious to see what researchers will find out in the future.
