Hi, I'm Anna Louise Wood. I am 15 years old, nearly 16 - not that I'm counting or anything 😂
I have acrodysostosis type 1 with hormone resistance and coeliac disease. When I was about 18 months I got diagnosed with coeliac disease and have been on a gluten free diet ever since.
When I was three, I woke up in pain in my hips most days and complained about it. One day I woke up in agony and couldn't walk so I went to A&E.
It took a couple days to work out that it was Perthes disease, so from then onwards I saw an orthopaedic every six months. They decided to refer me to genetics team, who originally thought I had Pseudohypoparathyroidism.
But 12 years later, after lots of testing, they diagnosed me with Acrodysostosis type 1.
They now know the perthes disease isn't perthese, it’s acrodysostosis with perthes-like symptoms.
I get pain in most of my bones, including my teeth. I have had eight surgeries; six on my legs and two on my teeth.
My first surgery was on my hips when I was six and my latest was just this summer on my teeth.
I also see a paediatrician, endocrinologist, orthopaedics, orthodontist and geneticist.
I am a dancer, which is difficult for me to do but I do it anyway! I can't do the splits, but I can do turns and when I can't do something, I switch it up for something I can do.
I hope that gives you idea of my life with Acrodysostosis.!
Anna xx