So here we go and sorry it has taken so long, please excuse me as well as I have short term memory loss and forget things really easy due to the EDS.                                       

 My mum and dad realised something wasn’t quite right when I was a baby; I was a late crawler and when I did start crawling I would drag my right leg behind me instead of crawling the way a child normally would. My parents pushed for the doctors to see what was wrong with me and every time they would say “she will grow out of it” or “it’s just a phase”. 

Then I started walking – I was a late walker – and my parents noticed that I always dragged my right foot instead of walking like any other child of my age, so again my parents pushed for a diagnosis and after a few years of this happening the doctor decided to run some tests. My parents were told that my right Achilles tendon was too stretched and I would need an operation in order to correct, which meant being put under general anaesthetic (at the age of 4) and having the surgeons tighten it.

I remember vividly, after I came around from the surgery, they offered me tea and toast, though being a 4 year-old I refused asking for sweets and juice. My mum ended up getting a bag of Wotsits and some cartons of juice, and the doctors let me go home with a nice big cast on my leg – going all the way from Black Notley Hospital, all the way home in my grandad’s Robin Reliant with my mum joking that it would tip the three wheeled car over.

Over the next few months I worked with a physiotherapist to learn to walk with the cast on my leg. I was then taken back to the hospital to have my cast taken off and to be measured for my Pedro Boots which I used to call my ‘special shoes’. I then learnt to walk with the boots on, which took quite a while because they were the first pair of shoes that I had ever worn. In order to strengthen the muscles in my lower leg I still had regular physiotherapy once a week for quite a while, still to this day I limp and when tired drag my foot. 

As a child I was very accident prone, I always suffered with clicky joints, my ankles, knees and hips would click when I walked and overtime this became painful, if I crossed my arms for too long my elbows would click once uncrossed. I broke my arm at the age of 5, I was continuously in and out of hospital with sprains, pulled ligaments ect...ect and I’ve always been one of those people that bruise really easy, no doctor could figure out why I was always getting so many injuries from doing something so little as tripping up a step, my parents were quite lucky social services never got involved.

 At the age of 10 in my last year of Primary school I dislocated my elbow, this was my first dislocation and I had never been in so much pain, the doctors x-rayed me sorted it out and sent me home, not questioning anything, all I had done was a hand stand! No doctor blinked an eye at how big my medical records were building up.

A few years went by and I was still suffering with sprains, strains and unknown bruising. When I was 21 I had my first shoulder dislocation it was awful and took a while to be put back in. Then I became pregnant with my little boy, pregnancy took its toll on my body and at 25 weeks I was put of bed rest because walking hurt too much. At 27 weeks I was diagnosed with pre-eclampsia so was told I had to stay in hospital until my baby was born, Owen was born at 30 weeks by emergency c-section at 23:17pm weighing 3lbs 2oz, he came out crying but was rushed straight into NICU, as the NICU nurse rushed past me on the operating table I got my first look at my tiny miracle. I was then taken to recovery; it was then everything went downhill, me and my ex husband were told to prepare for the worst; they thought I was going to die. After 3 days in ICU they said I was well enough to go and see my son, I was able to do kangaroo care with him and it was the most perfect moment of my life. I spent the next two weeks in hospital, my baby spending 4 weeks in the end, but myself and his dad visiting everyday and staying as long as possible. If I knew then what I know now then I would have realised that maybe I had EDS but because it is such a rare syndrome the nurses and doctors hadn’t even thought about it. 

Time went on and me and my ex husband drifted apart so myself and Owen moved away. I then started getting more pain and more shoulder dislocations. So I eventually spoke to my doctor about it who referred me for tests and an appointment with the rheumatologist, it was only then that I was told that I had Ehlers Danlos Syndrome at the age of 23, he gave me no explanation of what it was so I went home to do some research, I was devastated. 

Eventually my EDS has gotten worse overtime and I am now bed bound most of the time because of the pain. I also take a cocktail of pain relief everyday. I have had other problems connected with EDS like reoccurring miscarriages, IBS and more dislocations. I have also lost bladder control and have to constantly wear incontinence pads at the age of 27. I had been walking with the aid of crutches but as this made my hands, wrists, lower back and shoulders worse I had a home appointment with an Occupational Therapist who has said I need a wheelchair for when I’m outside and a walking frame for when I am at home. But I am lucky I have a wonderful partner who looks after me day in day out, I do feel like I am a burden to him and taking him for granted a lot of the time but at the end of the day he is my rock and I am eternally grateful for everything he does for me, it may not seem like it at times as sometimes the pain makes me angry, I’m not angry at him, I am angry at myself for not being able to do these things for myself.

So lets dig deep to help raise awareness and help pay for more equipment that is very much needed!

                                              Just remember:

          When you hear hoof beats think of zebras!