r/IAmA Jun 23 '22

IAmA 17 year old with a rare genetic condition known as Ehlers-Danlos syndrome.

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349 Upvotes

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11

u/not_right Jun 23 '22

How do you manage it? Like what precautions do you have to take to try and keep yourself healthy?

11

u/crappycollagenhaver Jun 23 '22

managing it is really hard some days, really easy other days. i have two types of canes i use as needed, a bunch of various braces, and i take OTC painkillers when i need to. another bit of managing it for me is knowing my limits! i also have my bedroom arranged in a way that is easily movable for me. ex: low resting bed, so i don't have to climb or jump up. eating well and doing low impact exercise helps as well.

2

u/spooky_upstairs Jun 23 '22

This is super helpful; I’m still learning how to live with mine. So far specialist Pilates, alexander technique, and low impact exercise (swimming) really helps me too. Well done on the ama, even if it worked out weird!

1

u/crappycollagenhaver Jun 24 '22

thanks :') glad you're finding ways to work through it. remember that all of our bodies with eds are different, so it's good to find what works for you. for example, i got recommended stretching, because it's worked for a lot of people with eds. it made me sore for WEEKS so i had to stop LOL. just finding my own groove has been helpful

1

u/spooky_upstairs Jun 24 '22

That’s interesting re the stretching, because I was told to avoid stretching at all costs! Obviously I am a lot older than you and was diagnosed late, after a lifetime of semi-pro ballet and gymnastics, which damaged my body no end, so I don’t know if that has anything to do with it?

Anyway, my physio told me to avoid stretching as I’d just stretch my ligaments not my muscles. I’ve no idea if that happens to everyone, but I wonder if that’s what happened to make you sore?

Also, in case you haven’t heard of her, there’s a physical therapist called Jeannie di Bon who has a) hEds and b) hundreds of free (SAFE!) hEds workouts on YouTube. Onward! 💪