Saturday Supplement: My Rare Disease Ehlers Danlos Syndrome

It was rare disease day in the UK last week. It made me think about my rare illness, and how it effects my life. So, if you are interested in learning about Ehlers Danlos Syndrome and how it affects me, read on! If you are not, have a lovely day, go and look at kittens.

What causes it?

·         EDS is caused by my body not being able to make collagen properly.

·         Think of collagen like the glue in your body that sticks everything together.

·         I’m not sticky enough on the inside.

What happens when you have rubbish collagen?

·         I woke up blind in one eye once, that was fun. Don’t worry, it’s mostly fixed now.

·         My bones move way too much and dislocate (pop out of where they should be)

·         My muscles don’t work very well. Weirdly though, they have to work 40% more than other people’s. So that makes them strong, but… lazy?

·         Pain. It hurts. Things are flopping about where they shouldn’t be.

·         I get very tired. It’s hard work trying to get your bones to stay in the right place, and having muscles that would rather do nothing all day long.

·         Headaches. So many headaches. Why? I have no idea. Maybe I’m so smart all the knowledge just bumps around and makes my brain hurt.

·         Sometimes my arms and legs just fly out at a crazy angle for no reason. Usually this happens in bed so it’s less embarrassing!

·         I can’t eat any milk, or wheat products because one day my body just decided it was poison. I also can’t eat much carbohydrates (things like rice or potatoes) because I can’t digest it very well and it makes me fall asleep.

It makes teaching a challenge sometimes. Thankfully, I am the luckiest teacher in the world, and all of my amazing students are very understanding. I would always rather rearrange a lesson if my head is exploding, than teach a bad lesson. My wonderful students make this possible.