What accommodations should I get at university for Ehlers-Danlos Syndrome?
Last Updated: 10/03/2020 at 6:32pm
Jennifer Patterson, LMFT, ATR-BC
Life can be messy. Sometimes you need a little support to make your way through it. I love to help guide people through their challenges & to find the beauty in our messes.
Top Rated Answers
At university, accommodations for Ehlers-Danlos Syndrome will depend on the severity of the Syndrome. First, I would consult the university to see what accommodations they offer, and what they recommend for you. You could as well speak to a close friend about this issue, as well, since they know your issue best.
I am a university student with EDS. I study from home but the disability support has been pretty great. If I share what I received, then it might help you and others see what they may be entitled to. I was given a sitting to standing desk which is a lifesaver, as sitting for long periods can be painful. I was also given an ergonomic chair, a headphone and microphone set, a new laptop, a laptop stand, a keyboard, mouse and beaded pillows to rest my wrists on. I also got software on the laptop that allows me to dictate to the computer and have it write for me because I sometimes get tendinitis which can prevent me from typing. I can also record my online lectures and annotate live, voice control my computer and use a mindmap software for helping me plan out my assignments. Oh and another software that reads the screen for me so if I'm feeling pretty tired or just can't concentrate well, the computer can read the book chapter to me, so that I can stay on track (brain fog). So those are the sorts of things you can get with this condition but it depends on how you're affected and how much it affects your studying. They consider any possible eventualities too, so I don't always get tendinitis but I got support for it, just in case I did develop it during my studies.
As there are different types of EDS it's hard to answer. If you call the uni accommodations they'll be able to give the the right advice on where to go, safe bet is if you were to go into blocks to be somewhere were if anything bad happened you can be rushed out, or even student housing is a good place too as you'll be in a house in which you could be sharing anything from 2 - 4 other people than yourself and have your own room too and not only do you have people around but it'll feel more homely too
“One of the most courageous things you can do is identify yourself, know who you are, what you believe in and where you want to go.” — Sheila Murray Bethel
I'm not sure about the answer on this one as I don't really know your circumstance and everyone's EDS is so different. What I would suggest is checking in with the university counsellors/medical team etc. (all called different things at different uni's). They are usually free and offer in person and phone consultations. They might be the best people to learn about your current circumstances and sort out with you what would be a great fit. Sounds like an exciting time! Good luck with everything, from a fellow EDSer :)
Sadly EDS Is a very multi layered condition and it effects everyone in different ways, some may be able to run a marathon with EDS while others may be confined to a wheelchair. It entirely depends on you. I would look at what help you needed through your previous education and explain this to the university. Also be prepared for your condition and it's effects to change constantly while you are at university as different years and weeks may be easier than others. Ultimately maybe write a journal of the things you find challenging and see how you can tackle each individual issue. (I have Type III EDS)
It's likely they'll offer you support in the form of assistance getting to classes, people to carry heavy textbooks and items for you. The ability to store heavy items you'll repeatedly need in the classrooms and other emotional support also. Please check with the university, but I'm confident they'll arrange everything physically possible for you to feel safe, and inherently welcome.
carpeted areas are preferable to slippery floors...avoiding use of stairs in favor of elevators, evaluation by occupational therapist of appropriate seating. when there is mild hypermobility of joints some physical exercise with other students may be considered, but this is dependent on the level of effect of the disorder on the child (according to ehlers-danlos foundation).
I know that you can have excessive absences excused and priority registration so that you can schedule classes where and when you need them.
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