How it all came to be...
It was first noticed that I walked abnormally when I was about three; I think the general consensus was that I would grow out of it. As it became apparent that the problem was not going to simply disappear, our parents started trying to find out what was wrong and what could be done. At the age of 7 it was decided the likely diagnosis was multiple epiphyseal dysplasia (MED), also known as “Fairbanks disease”. MED affects around 1 in 10 000 people- the most famous being Danny Devito. We were told that there was no treatment and I may experience joint disease later in life.
Throughout the years at primary school, I walked with a waddle and after strenuous activity; my joints would get very stiff to the point where walking could be nearly impossible. I loved football and even played in goal for the school team, I was in the cubs, went away on camping trips, built tree houses – generally did all things any normal boy would. I knew I was different, but I was never prepared to think of myself as “disabled” and it just made me more determined to be “normal”. I was very lucky, in that, my parents and everyone at Stokenham Primary School were very supportive. The photograph on the left was taken on a ten mile sponsored walk we did for the Bible Society when I was about 9 and typifies how we dealt with condition- it may have hurt, but sheer bloody mindedness and constant, unwavering support from my family meant I always got there eventually, even if it did take me a little longer than anyone else!
When Tom was about 8, it was noticed that he was starting to develop the same waddle. Our parents were not satisfied with the original diagnosis and were tireless in their pursuit of any treatment that would help us. As such, we spent large amounts of time driving all over the UK, visiting various specialists looking for answers.
As we got bigger, the condition had a more pronounced effect and made life increasingly difficult. Eventually we found a surgeon, Mr Huw Thomas, from the Glenfield hospital in Leicester who was able to give us a firm diagnosis- we had spondyolepiphyseal dysplasia tarda (SED)- a rare genetic condition affecting around 1 in every 150,000 - 200,000 people. Mr Thomas’ prognosis was that we would probably get arthritis earlier in life than normal and might need hip replacements in our fifties.
Things developed a little quicker than expected and by the time I was 13, the condition now affected me so much I was forced to walk with crutches full time. To me, this seemed like admitting defeat, but on the plus side, I could keep up with everyone else. Tom went onto crutches around the same age. Walking with crutches meant that there was significantly less pain, but I suppose it confirmed our status as “disabled”- and we had to finally accept that there were things we simply could not do anymore.
By the time I left school, I had just accepted the way I was and didn’t really think about looking for a solution anymore. I was living in Exeter and went to visit my GP about a persistent cold, he asked why I was on crutches and I explained. My GP said there was a world renowned hip expert at the Princess Elizabeth Orthapaedic Centre and suggested I go to visit him. I didn’t hold out much hope, but as it was only a few hundred metres from my front door, thought “why not?”
A few months later the appointment came through to see Mr Gie. I toddled along, feeling rather sceptical. Mr Gie examined me, sat me down and informed me he could give me a hip replacement and after that I would be able to walk unaided.
To be blunt, I didn’t believe him! The thought of being without crutches was wonderful and terrifying, it was something that, by that point, I had banished from my mind. I told him I would think about it...
Needless to say, it didn’t take too much thinking about and in the summer of 2001 Tom and I went in for our hip replacements. Even after the operations, I don’t think I really believed that I could shed the crutches, until one day, I just went out without them...
Sitting here writing this now, it is impossible to put into words what those operations have done for me; yes, being on crutches wasn’t “that bad”- you can make the most of what life gives you, or you can lie down and die- but being without crutches is so, so much better and we honestly cannot thank Mr Gie and his team enough.
Orthopaedic research has made our lives so much bigger. Since Matt had his hips done in 2005, he has been snowboarding, worked as an exploration Geologist in the Australian outback, travelled round Asia and qualified as a diving instructor- things that simply would not have been possible before surgery. The Hip Trip is about saying thank you, celebrating the wonderful opportunity we have been given and helping Joint Action to continue making life bigger for other people.
