Where to start.....

What is this all about? Well lets see, where to start....

What is with the title? Obvious reasons include the fact I love the movie Alice in Wonderland, the other possible reason comes from my medical history where many doctors have seemed curious, puzzled, perplexed about me...

Let me explain.....

I have a condition called Fibro Dysplasia Ossificans Progressiva, lets call this FOP for short, I mean really it's such a mouth full and hard to remember even for people who have it. There are approximately 700 people worldwide with this condition and only 12 known cases in Australia making it extremely rare and unique

As with any rare condition it is complicated, difficult to explain, difficult to understand, and more. In very simple terms it causes bone to form in muscles, tendons, ligaments and other connective tissues basically my body is forming another skeleton, although I think 1 is enough!!

Hmm there is so much more to add but in the meantime, if you would like more information please visit the official FOP website www.ifopa.org