One of the major issues related to Duchenne that I want to discuss is scoliosis. This is when the spine develops a curvature to the side which normally affects people aged 11 to 15. Scoliosis can happen for many different reasons, but young boys with Duchenne can be particularly susceptible to it as I discovered. It was one of the most significant health problems for me that I have experienced in my life so far.
For me, the curve developed when I was 14, gradually worsening until I was eventually sent for an x-ray. The curve was about 67 degrees at its worst point and required surgery. Before I found out about the extent of the damage, some of the physiotherapists I was seen by suggested solutions to try and correct my posture, such as a chest harness for example, but at the time I did not want to be restricted physically as it would have prevented me from doing things I wanted to do. Despite this, I feel like it should have been impressed upon me and explained more clearly as nobody had really highlighted scoliosis before I was told just how far it had gone.
I had surgery just after my fifteenth birthday which was successful despite me ‘mis-behaving’ on the operating table according to the anaesthetist, whatever that meant. However, I think that much more attention needs to be drawn to the potential of scoliosis as soon as possible because it can have a huge impact on your life. Mine was lucky to be caught and treated in time but it should never have reached such a dangerous stage. It probably could not have been entirely prevented but doctors should definitely give their patients some more information when it comes to this.
I also think that spinal surgery should be considered earlier than it currently is, to make sure the opportunity is not missed. Not treating a curve could stop people using their wheelchairs which would be devastating for someone with Duchenne. If I was given surgery sooner my body position would be much better than at present. Surgery certainly should not be delayed for any reason, and especially not because of petty disputes between consultants and surgeons, for example.
Hopefully this information will be useful and give some food for thought. I was taken by surprise when I found out about the scoliosis but I don’t think others should be, so don’t be afraid to ask about it.