MY EDS STORY

I have shown signs of EDS since I was born. I had the very velvety skin. I was described as having 'floppy baby syndrome'. I cried a lot more than other babies. I would only cat nap for 10 minutes before I would wake up screaming. I couldn't keep my food down because of severe re-flux.

I hit all of my milestones late. Mum too me to doctor after doctor as she was worried. She had 2 other children and she knew something was wrong. The doctors told her she was 'neurotic'.

I bruised very easily, from rolling over in bed or being picked up. Mum was worried that she was hurting me.

I never crawled properly as I didn't have enough strength in my hips.

When I started to walk I was very clumsy. I would run into things or fall over. I continued to get bruising. Mum continued to take me to doctors. No one could tell Mum what was wrong.
Once I was walking I still had to use the stroller as I couldn't walk for long without my legs hurting.

When I started kindergarten sports were hard. I couldn't catch a ball without hurting my fingers, if I ran or walked a lot my hips and knees would hurt. Mum continued to take me to the doctors and they told her it was just growing pains.

For my fourth birthday my brother and sister-in-law brought me a small plastic slide. The next day I was outside playing on it when the slide tipped and I tipped with it. I was screaming. My arm looked abnormal and was hurting a lot. Mum rushed me to Princess Margret Hospital. They gave me painkillers and X-Rayed it. The X-Ray confirmed it was broken. This was the beginning of lots of hospital trips for me. I was not allowed to go back to school until my arm was fully healed so I missed a term of school.

One day when I was 5 I fell and hit my other arm on Mum's dressing table. Mum rushed me to Armadale Hospital. The X-Ray showed a break so they half casted it and made an appointment with the Fremantle Hospital's fracture clinic. When I saw the doctor there he decided to operate and re brake my arm because it was healing wrong. I was in plaster for 8 weeks and I missed another term of school. Mum homeschooled me for a term of grade 1.

I started physio for my legs. the physio put me in a knee brace because I had an unstable knee cap.

I started at a new school for Year 2. I was badly bullied because I walked differently, because I have 1 leg shorter than the other. They bullied me because I wore a knee brace and because they knew I got hurt easily. They would push me over and see how badly they could hurt me. Eventually they tole me that if I brought them food they wouldn't hurt me. So I would sneak food into my back without Mum knowing. One day Mum caught me and I told her what had been happening so she pulled me out of the school.

On my Uncle's 50th Birthday he had a party and I was unable to walk properly. Mum started to take me to countless doctors and they still told her everything was fine. Mum took me to another physio who told Mum I had flat feet and I had to wear Orthotics and the doctors said that was why my legs hurt. Then I started to loose strength in my arms and Mum knew flat feet were not causing all of my probles.

I got very sick and was in hospital for the first week of Year 3. My temperature would not go down and the doctors could not figure out why. They did a lot of tests and eventually I was allowed to go home.

My body continued to get weaker so again it was back to even more doctors appointments. In July of 2006 our GP sent us to Dr. Kevin Murray who he had gone to University with although he didn't think anything would come of it. In less than an hour with Dr. Murray I had a diagnosis. I have Ehlers Danlos Syndrome. I was put into Princess Margret twice that year.

I have Ehlers Danlos Syndrome Type 7A with type 2,3 and 4 crossovers. It affects my hips badly. They sublax and dislocate daily. It causes me chronic pain.

EDS affects my ability to walk. I use a wheelchair, crutches, walking stick or mobility scooter depending on how I feel that day. I have chronic pain which makes every day a struggle.

I have faced discrimination about my illness. People in the general public assume because I look normal and I am young I am fine. The majority of the medical community know nothing about EDS and I used to be bullied at school.

The lack of awareness made getting a diagnosis and treatment hard. Lack of awareness in the future will mean discrimination and wrong medical treatment in the year to come.

Increased awareness would mean not having to explain ourselves to everyone and it would mean better treatment options.

EDS has caused several secondary conditions. I have hypothyroidism which means I cannot control my body temperature. I also have Postural Orthostatic Tachycardia Syndrome- this causes me to feel dizzy and faint a lot. Osteoarthritis in most joints from the constant dislocations. Gastroparesis meaning that my stomach muscles are paralysed and I cannot digest food properly. I have Chronic Fatigue Syndrome and Fibromyalgia. I am also being investigated for seizures.