Hi,
I have a rare genetic condition called Ehlers Danlos Syndrome type 3. This affects me 24/7, I had to have double hip reconstruction surgery when I was 11 and again when I was 13, I was in a wheelchair and unable to walk until I was 15 (I was told I would never be able to walk) during this time I received DLA. I was desperate to improve my situation and worked hard every day to improve my mobility issues and now today, 3 years later, to look at I appear almost normal (unless you see me run 😂😂😅). I was refused pip when I reapplied when I was 16 (despite being permanently on crutches t the time 🙄). Even though I am much better now I still have mobility issues and struggle to walk long distances, also because of my hEDS my joints (everything from my ankles, knees, shoulder, wrists, fingers, hips) dislocate on a daily basis (technically they sublux so they go back in most of the time, (unless it is my knees or shoulder 😬)) obviouslythis causes a lot of pain but I’m used to it and take strong pain killers, I can still participate in mild sports and stuff. Also because I wasn’t able to walk until I was 15/16 ish my leg muscles are really deconditioned which makes walking long distances even more difficult. I was refused PIP, but would I qualify for DSA? My mum is not sure that I would. I come from a very low income family of 6 so they will not be able to support me at all during university, I am also the first person in my entire family to ever go so I don’t know what to expect. My mum normally drives me everywhere, would I get help with transport to pay for buses and maybe a bike (on good days). Would they be able to ensure I am in a lower floor of the uni halls so that if I am having a bad day and I am struggling It is easier on my legs. Also, because of my condition, I struggle to write sometimes as my fingers and shoulders sublux. This is especially bad during exams where you have to write really quickly (during my GCSE RE exam I fully dislocated my shoulder and now I have nerve damage). Plus my condition caused a secondary condition, Raynaud’s disease which I have quite a bad case of so sometimes when I am having to write really fast and the weather is really cold and my hands are completely numb I don’t realise the pressure I put through th even and on a couple of occasions this has led to me breaking my fingers. Will I get anything to help with this? I have been told about a laptop but I could really do with a very small one and light one so it is easier to carry around and I feel that the one they would help you pay for would probably be incredibly slow (like schoo I don’t know how they could help with this aspect of my condition but I thought I would put it out there anyway. Also. This is a bit embarrassing so please don’t joke, as my condition affects the structure of my organs, I have a very severe case of IBS (I go toilet once a month but when I do go I will be in the toilet for hours and I think that would be awkward) so I could really do with an en-suite, there is no way I could pay for this except out of the like £8000 living costs loan they give me which would leave me with like nothing to live off as this would be all I get, would they contribute anything to help with making up the difference between a normal room price and an en-suite? I know this one is a long shot but I thought it best to ask. Is there anything else they would be able to help me with?