By this time I was unfit for the 100 m dash in any category. There was persistent pain in my ankle causing me to drag my left foot as I walked. This meant I couldn’t walk fast or bend down easily to lift things. Knowing there was no real cure to this condition, I endeavoured to exercise regularly, thereby keep the joints supple.
About this time I learnt that consanguineous marriages could be one of the causes, and indeed my parents were first cousins. Such marriages between close cousins was not uncommon in our traditional south Indian community.
Newer manifestations of my condition surfaced as years went by. Whenever I bent my right knee, there seemed to be some unusual activity happening – like some loose bodies running up and down around the joint. I began to anticipate and experience this every time I put on trousers, and one fateful morning, the right knee just locked. The pain was excruciating and it took an emergency Arthroscopy to take out the offending little balls made up of bits and pieces of cartilage. I have also had operations to remove kidney stones, and had both my hips replaced.
Now both my hips are fine, I can stand straight with the legs together but since the knees are week, I use a stick to walk around. Thankfully, driving is not a problem.
Thanks to Google, a couple of years ago I became aware of the AKU Society. I was quick to volunteer for SONIA 2, but it turned out the funding wouldn’t extend beyond Europe. But I had the opportunity to attend a seminar on AKU at CMC, Vellore and listen to encouraging presentations on the effectiveness of nitisinone by Prof. .Ranganath and also participate in the awareness campaign launched by Nick Sireau.