Will I be able to get DSA and what for?

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Caitlynann2002
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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?
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Caitlynann2002
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Sorry for the essay 😂😅
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alova
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Hey, I also have hEDS (& co-morbidities) and have applied for dsa. This was accepted & I’ve had my assessment. I’m just waiting for confirmation from SFE that they have accepted the recommendations so you should definitely apply. I have been recommended software that will help with my studies & an ergonomic assessment. You don’t need to qualify for pip to get dsa, just make sure that whatever medical professional is filling out the form for you knows how things effect your study. I had to get mine filled out multiple times due to it not providing enough information. My dsa assessor was really helpful, and really looked into things that would help me. Basically it’s nothing like a pip assessment.

With regards to the room, I don’t think that they offer anything to help with the costs of that as that. But I spoke to the disability office at the university I’m going to and explained my conditions and we spoke about adjustments etc for classes & exams etc. and when I submitted my accommodation application they worked with the accommodation department to get me an accessible rooms with an en-suite wet room. So I’d recommend talking to the disability department of your chosen uni, and see what they can do to help you, It I don’t think dsa will help you with the cost of the room though, as that’s what your maintenance loan is for.

They can give you money to help contribute with travel, but there are some conditions with this, dsa would explain those to you.

Feel free to drop me a message on here and I can go into more detail about my experience with dsa & stuff & what I was offered.
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