Ehlers Danlos

Hi,
Was wondering if anyone has Ehlers Danlos Syndrome and are studying? Been recently diagnosed with this, (hypermobility type) and get a lot of pain, chronic fatigue etc. Been accepted on a Access Computers for Sept with a view of going Uni next year. I'm 31 now so am not getting any younger and whilst I know people who do suffer with this, our symptoms can be different, I'm just wondering if an intense course will be do-able with the pain and fatigue etc.

Reply 1

ChristineE96

Original post by tazpafc

I have hypermobility (ehlers danlos one) and am 17 so studying in my final year of a levels. Ive had the pain all my life and fatigue for about the last 5 - 10 years.

Studying can get intense. Talk tk lecturers etc and explain the situation. Most should be willing to help out. For example, special conditioms such as rest breaks, extra time and laptop during exams or not carrying textbooks.

Feel free to ask me any questions, I will be going to uni next year :smile:

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Reply 2

tazpafc

Original post by ChristineE96

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Thanks a lot for your reply Christine. I will certainly do that.

Reply 3

llpretoria

I have Ehlers Danlos as well. Im 20 and in my second year at Loughborough University reading Human Biology.

I have difficulty writing for long periods of time due to my dislocations, however i receive a DSA which provided me with a Dictaphone and voice activated software for my computer, which makes things easier.

I also get extra time, rest breaks and a computer for all my exams, so make sure you talk to the departments disability office and get any special arrangements you need sorted.

Reply 4

tazpafc

Thanks for your reply llpretoria. Great information and I will certainly speak to the department. I suffer from bad pain in my hands after writing for a short time so hopefully I can put something in place. The course I'm doing is Computer Systems And Networking so will spend a lot of time on a computer anyway. The extra breaks will make a huge difference. I do suffer from fatigue so taking a few breaks will help.

Reply 5

llpretoria

Have you applied for a DSA?

i got lots of things to help with my note taking etc, but also received an ergonomic desk chair, footrest, book stand and lots more. All of which are very useful for keeping my bendy joints more or less in place and generally making uni life a bit easier. Definitely worth looking into if you havent already

Reply 6

tazpafc

No I haven't yet. Will definitely look into it. Was wondering, when you went to speak someone about your disability at uni, did they know what EDS was? My doctor doesn't even know much about it which is a bit of a pain so I'm hoping the people at uni may know something, but if not, I have some leaflets and stuff I can take with me.

Reply 7

llpretoria

The disability office didnt know much about EDS and neither did the DSA assessor. But i just explained what it what and how it affected me and there was no problem. I took lots of copies of my medical letters with me just in case, but i dont think they actually asked for any proof of my condition or any further information on it, but it never hurts to be prepared and take things with you.

Reply 8

ChristineE96

When I went to open days and spoke to the disability department they wouldnt necessarily know eds but they would know hyper mobility syndrome

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Reply 9

famousrain

I have EDS/HMS, im doing a levels from home, it is hard but if you pace yourself you can do it :smile:

i'm hoping to go into midwifery! there is always ways around things/adjustments, good luck with the course

Reply 10

behindblueglass

Hey, I know this is not even mildly as severe as your condition and the pain/suffering does not come close. But I have just plain hyper mobility syndrome and am current going to physio sessions to strengthen the muscles particularly in my hips and back so eventually I can do sports like I did when I was younger. But I go to college, get home, sleep for 2-3 hours, then revise for about 4 hours. I must admit I feel exhausted all of the time. I'm a waitress in holidays and at weekends and after a 6-12 hour shift I get home and I can't move my hips without pain. To even carry out a shift at work I take 2-6 ibuprofen and usually 2 paracetamol during the day. I pretty sure it's bad for me but I'd be no where without it on work days.

I really hope everything works out for you, and you get to fulfill your goals. Don't give up you can do it! :biggrin:

Reply 11

famousrain

They reckon there isn't any difference between EDS hypermobility and hypermobility syndrome in terms of joints, it's just if you have gastro issues etc, pain is relative to everyone so just because you think it isn't as 'severe' it still is to you x

Reply 12

tazpafc

Original post by behindblueglass

Sorry only just seen this. Didn't get a notification for some reason. I know what you mean by the pain. Gets hard sometimes. I'm really focused on doing this though so will have to put up with the pain lol. I'm also having physio mainly for my posture atm. Hope it apl works out for you and thanks for your reply.

Reply 13

tazpafc

Original post by famousrain

I have EDS/HMS, im doing a levels from home, it is hard but if you pace yourself you can do it :smile:

i'm hoping to go into midwifery! there is always ways around things/adjustments, good luck with the course

Really sorry for the late reply. Not getting notifications. We can do anything if we want to. Just may be that little bit harder but surely will be a bigger sense of achievement when we succeed.

Reply 14

tazpafc

So sorry everyone for replying late. Haven't been getting notifications for some reason. Not being ignorant honest.

Reply 15

behindblueglass

Original post by tazpafc

Physio is going really well for me ive already been able to go down from 4 ibuprofen to 2 and 4 paracetamol to 2 on work days and none on non work days im now biking and walking most days and loosing weight I really do hope you are happy and get to do what you want :smile:

Reply 16

tazpafc

Original post by behindblueglass

That's great to hear. Exercise definitely helps and the Physio's are great. I get real bad pain nighttime when I'm trying to relax. Reminds me of so called growing pains. I'm prescribed Codeine but don't like to rely on it too much so am also prescribed Paracetamol and Ibuprofen which helps but i also suffer from IBS as well. Pretty much constipated all the time and i don't think that the Ibuprofen helps with that.