Because May is EDS awareness month I thought I'd write down how and when I was diagnosed, the problems I've had to deal with and how I've coped with the diagnosis. Basically my story so sorry but this might be a long one.

For as long as I can remember I have had pain in my legs. I used to wake up in the middle of the night and crawl crying to my mums bedroom with a pain behind my knees. My parents knew something wasn't right but convincing the Dr's was a problem. Even as a baby I used to cry for no apparent reason. When I could hold my own bottle I used to hold it in my feet because if I could get my feet to my face why the hell not. I was pretty good at gymnastics if I do say so myself, I had the bendiness, although I used to suffer afterwards. If I ever sat on my dads shoulders I couldn't walk afterwards.

When I was 2 I think, I was playing ring-a-roses with my dad and apparently I went to "all fall down" and my dad didn't so my arm stayed in the air dislocating my shoulder. This resulted in my parents being investigated for child abuse because of course I bruise easily as well so there was the random bruises to explain. When I was 5 my dad pulled me up off the floor holding on to my hands once again dislocating my shoulder resulting in another child abuse investigation. I saw countless specialists, consultants and GP's. My mum was told she was depressed, she was making it up, she wanted me to be ill and she was injuring me. Apparently I was told I was depressed, an attention seeker, I just wanted to sleep in my parents bed. Then I was told I had leukaemia, bone cancer, arthritis but tests proved these diagnosis to be wrong.

My mum was about to give up and just try and help me as much as she could herself when my GP convinced her to see just one more consultant. When I was 10 we went to Bristol to see this consultant. As soon as I walked in she said " wow I haven't seen Ehlers Danlos for a while". We just looked at her confused. She sat us down and explained what it was and suddenly everything made sense. I was diagnosed with type 3 also known as the hyper mobile type. She also explained that just by looking at us she could tell it had come from my dad. This was due to the way our feet rolled in when we walked and our knees hyper extended when we were stood. I know I was one of the extremely lucky ones, getting a diagnosis that young. She changed my meds and sent me for physio and for a few years it was okay.

Then I hit puberty and everything went downhill from there. It used to just be my legs that hurt but slowly more and more joints were added to the list. I had to stop doing games lessons and I was missing so much school due to being in too much pain that I started falling behind. When I got to year 10 it got worse. My knees went through a phase of dislocating a lot. Apart from my shoulders as a child and my jaw I'd never dislocated anything. Every time I would end up in A&E and they would put me in plaster for 3weeks. As soon as it was out of plaster I was referred for physio but the muscles were so weak that it wasn't long before they popped out again. After 10 dislocations & plaster casts I gave up going to A&E and just put a support on them and did my physio. The doctors at the hospital were so horrible to me & tried to make out I was faking & there was nothing wrong with me which is another reason I stopped going.

By this time my knees were a regular thing, my shoulders had started and my back was constantly hurting. My ankles and wrists were weak. My fingers, toes and jaw dislocated daily and I was really down. I got referred to see Professor Graham and I was really excited but I didn't find him as friendly as everyone said, He just confirmed the diagnosis but he did also refer me for 2 weeks intense physio course in Great Ormond street. It was great and my muscles were really good but I still managed to dislocate quite frequently. I carried on seeing a physio once I got home but she was scared of me and quite often cancelled appointments last minute and gradually she just stopped coming out.

Just before the physio my GP sat down and had a chat with me and we decided that even though I really didn't want to a wheelchair would be a lot of help. I was devastated but it did help a lot. The physios were convinced that I wouldn't need it after the two weeks and I prayed they were right but unfortunately my body had other ideas.

When I finished my GCSE's my hips suddenly decided that they would start playing up and because I didn't have enough problems I started getting really bad acid reflux. My GP didn't know what was wrong but put me on an anti-acid med and ignored it. I also suffered from really bad fatigue and I didn't sleep that well. My thyroid was tested but came back fine. My A levels were so hard and I never thought I would do it. I had the help of a note taker who carried my bag and also pushed my chair on the days I took it in. My school were pretty good and I finally managed to get 3 B's in Chem, physics and Biology. I have never been so pleased as when I got into Bangor university to study Biomedical science. Doing my A levels was the hardest thing I have ever done but I'm so glad I persevered but without the support of my family and school I would never have achieved it.

Fast forward to now and the doctors have finally realised that maybe they should find out why I have the acid reflux. I've been referred to a gastro specialist. Got knocked off the books because I was in uni 200miles away so had to cancel the appointment. Finally got back on the books and am waiting for the tests. I've got a new consultant because once I hit 16 everyone just got rid of me and I had to fight to get back into the system. No one really knows what to do with me. I see my GP to get the best suited painkillers, NSAID's etc.. I see a consultant every 6 months who hasn't got a clue about EDS but refers me to people that could help with secondary problems like the gastro doctor. Apart from that I have now learnt to look after myself and have pretty much given up on doctors. I know my body and know when I need to get help.

I have to use a wheelchair for long distance walking like when I go shopping. I also tend to sit in it in lectures because my chairs comfier. I have a manual but I cant self propel because my shoulders and fingers dislocate so I also have an electric one. I do have a walking stick and crutches as well but the hurt my shoulders and wrists and sometimes push them out to. I study Biomedical science and some days I struggle so much. The pain is terrible and the fatigue makes it impossible to concentrate on my studies. Some times I wonder why I'm doing it but I want to prove that having a disability doesn't mean you have to give up your dreams it just means you might have to work a lot harder to achieve them. I managed to pass my driving test a year and a half ago and at the moment I manage to drive a manual car and I love it. I never thought I would be able to do that.

My knees still dislocate a lot, in fact I am sat with an ice pack on my right knee at the moment as I  have managed to pop it out twice today. I also have a finger taped as that also decided to pop out for no reason today. My hips are killing me and I'm desperate for a good nights sleep but I cant remember the last time that happened. I get told all the time that I don't look like I'm disabled. I've even been accused of hogging a disabled space & had to prove to a stranger that the blue badge was mine. There are days when I cant even get out of bed and my mum has to help me walk to the toilet. At uni I have to have carers to do my cooking and cleaning because it hurts too much. Some days I have to get someone else to wash and dress me or put me to bed. I'm 18 and sometimes I need dressing. I have baby cups with lids because I spill things. My friends have to cut up my meat for me and open my bottles. Just going to the shops is hard. I've had to sit on the floor in the middle of Tesco because the pain got too much and my body just gave up. I don't just have to live life day by day, I have to live it hour by hour. Some days I can think I'm going to have a good day and then I'll suddenly get hit by the pain or fatigue and have to crawl back into bed. I cant make plans because I never know how I'm going to feel on that day. I have to miss so many things that an 18year old girl should be doing. I have to plan days of rest. A night out will wipe me out and cause extra pain for at least 3 days. I always have to try and judge if an event will be worth it and if I can afford to be in bed for the days after it.

I know a lot of people think that EDS is just having bendy joints and stretchy skin. It is so much more. I've been in so many hospitals and seen so many doctors I've lost count. I've been accused of being a fraud. I've lost friends and had to give up so much. I've had to change my dreams and I'm still not sure I will be able to full fill them. My family have to watch me in pain knowing they cant do anything to help. I have to watch my 13yr old brother go through the same as I did knowing I cant stop him getting worse. He has to watch me knowing that this is what it will be like for him. There is no cure. Life with EDS isn't easy and I thought I would share my story to show what it can be like. I would not be where I am now without the support of my amazing family and flatmates and the brilliant friends I have made on twitter who go through the same.