One of the most surprising things about my journey with diagnosis and understanding EDS/HSD, is realising how many things I went through as a young person can be explained by EDS.

Todays prompt from The Ehlers Danlos Society is ‘Fact or Stat about EDS & HSD, so here’s a fact, people with EDS/HSD often have trouble holding pens/pencils/knives/fork etc. Our fingers don’t work like normal people. Our grip is off, often weaker, making tasks like ‘writing neatly’ VERY hard.

Join me for a chat about pen licenses, and why we need to stop measuring our value by our aptitude.

Do you see a flare coming? I don’t always. Sometimes in retrospect I see what might have released the flying monkeys, but not always. I’m honestly still trying to figure out what causes most of my symptoms!

in today’s episode (which I wrongly call episode 3 instead of 4, I swear I’ll get it together lol), based on the day 5 Ehlers Danlos Society prompt, we’ll chat about dealing with what EDS throws at you, and what its like to trying to explain it to other people.

We’re at the Day 4 prompt for Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder awareness month, and today, I would like to shine a light on a lesser known type of EDS, Myopathic EDS (mEDS). Please also ignore when I call this episode 2 in the episode, I got mixed up!

I’m sharing this type, not only because its rare, but there’s an outside chance it could affect me. I have a Variant of Unknown Significance (VUS) in my COL12A1 gene, which is the gene affected in mEDS. At this stage, its not considered to be a problem, but given my HSD (and possible hEDS), I keep up with the research anyway.

I talk a lot about research in today’s episode, so here are the research papers I either reference directly or refer to as ‘research‘ (I’ve also forgotten more than I remember about attribution formatting, so I’ve tried my best!)

Here’s the thing about hidden disabilities - they tend to be hidden. There’s a lot people don’t see, and that’s the subject of today’s episode.

Following along with the Ehlers Danlos Society’s prompts for this EDS/HSD Awareness month, let’s chat about about what you don’t see.

Trigger Warning - Medical gaslighting, Chronic illness

Welcome to my new podcast!! This is my first ever episode, so friends it is rooouugghhh. But its all me, and I’m heckin’ proud! I decided to launch my podcast in time for Ehlers Danlos Syndrome Awareness month (May), and try to follow as best I can the daily prompts from the Ehlers Danlos Society.

So grab a cuppa, and come say hi!