The story of Karl
I’ll be honest and say I’ve never been very vocal about my hip problem, mainly due to its hidden nature, but also because I hate receiving pity. However, today is Rare Disease Day, and I think it’s important to raise awareness about it. I suffer from Perthes Disease, a rare condition that affects approximately only 1 in 10,000 children. It’s defined as the idiopathic avascular osteonecrosis of the femoral head. This basically means, for some unknown reason there’s a lack of blood supply going to my hip which caused the femoral head to die and collapse. As a result, this caused me to walk with a limp and limited my hip’s range of motion. My first major hip osteotomy was at the age of 8, an invasive procedure to make the femoral head more spherical and to be better contained within the joint.
After this period, I spent 6 months in a wheelchair and on crutches before I was able to walk unassisted again. This was one of many salvage procedures to preserve my hip. Currently, I’m still living with it and my hip is in a pre-arthritic state. It may not seem it from the outside, but I deal with chronic pain everyday. It’s the little things in life that the pain can really affect me such as sitting, walking and especially during my sleep. The best way I can describe my pain is it feels like a constant toothache in my hip…yeah it’s very annoying aha. Despite this, I try play with the cards I’ve been dealt, and I’m extremely grateful for the opportunities it has given me. One major opportunity it gave me was to take part in the world of Para-Swimming for 6 years, specifically, in the “minimal physical impairment” S10 category.
I represented GB internationally and finished my swimming career with holding 7 British Records and even broke 1 European Record. So in many ways, I’m proud of my dodgy hip and it’s given me the opportunity to meet some incredible people along the way. I guess the message is not all disabilities and impairments are visible and some are hidden. Hopefully you’ve not got bored of reading this essay and you’ve gained an insight into a rare disease and a bit about my life.Â