I was diagnosed with Perthes hip in 1997, shortly after my third birthday.
The diagnoses itself took longer than usual as we had to wait for the consultant, Mr McNicol, and I’d initially been complaining about a sore knee. When my dad first heard it was Perthes disease he didn’t get any further explanation, so he went straight to the Edinburgh University bookshop and read along the shelves in the section to find out more. In a pre-internet world, this was very much the equivalent of googling symptoms and so mainly caused my dad to worry even more, especially when he learned of the more invasive operations that were sometimes resorted to.
When seeing the consultant for the second time and telling him what my parents had read about, Mr McNicol, was surprised and simply asked why they hadn’t read his own paper about the non-invasive treatment he had developed. This form of treatment primary involved traction followed by a certain amount of time in a wheelchair. The aim being to pull my joint apart and allow it to regrow correctly rather than cutting my thigh bone and realigning it.
I spent the first month or so in traction at the Sick Kids hospital in Edinburgh, with my dad sleeping on a camp bed next to me. He remembers me having cramps and nightmares throughout the night so I’m grateful that he was there. My own memories of that time are scattered and mainly involve the toy selection in the hospital waiting room which included a Playmobil pirate ship that I loved.
After 6 weeks or so we were able to have the traction bed installed at home in the living room downstairs. This was undoubtably a difficult time for my parents who had to juggle looking after me with bringing up my three older siblings, all teenagers at this point, as well as overseeing a lot of work being done on the house. All this with another baby on the way and my mum’s boss trying to end her contract to avoid paying her maternity leave!
Family members were drafted in one after the other to help look after me, change my bandages every day and mainly distract me. Right up until a couple of days before first complaining of a sore knee, I would spend most days in the garden playing football, so I actually had to be trained to watch television for long periods. It didn’t take long for The Lion King to become a firm favourite, although the television in question was so old it didn’t have a remote, so I had to use a stick to change the channel or adjust the volume.
My standout and most vivid memories of these months at home in bed are the bandages on my legs, the amazing Lego table that I could use on the bed and meeting my little sister Zoe for the first time.
After 3 months I was allowed to leave my bed at home, but I still wasn’t allowed to put any weight on my hip joint, so the hospital provided us with the heaviest wheelchair ever! Our house wasn’t designed to be wheelchair friendly, so I spent most of the time shuffling around on the floor between designated areas next to heavy bits of furniture that I could be attached to with a harness.
I returned to nursery using the wheelchair which was affectionately nicknamed “the magic carpet” by my friends. It was great to be back playing with other kids, although I distinctly remember being quite upset that I couldn’t join my friends in the upstairs and inaccessible part of the nursery.
Despite not yet being allowed to walk, I was encouraged by my doctors to cycle to stimulate the regrowth of the joint and get me fit enough to walk again. My parents bought me a little tricycle and I absolutely loved it! My mum always tells me how far ahead and fast I used to go, scattering anything and anyone in my way.
The whole process took about a year and by the following summer and my fourth Birthday, I was up and about again causing even more chaos.
I started playing football again and have continued to do so my whole life as well as enjoying all kinds of other sports and activities. In 2020, I decided to help raise money for the Darby Rimmer MND Foundation and did so by completing a 1000 mile running challenge as a nod to fellow Edinburgh boys, The Proclaimers, and one of their most famous songs.
I don’t seem to have had any issues with my hip over the past twenty years and can only thank Mr McNicol and the Sick Kids Hospital in Edinburgh for their treatment and support for me and my parents throughout. I’d also like to use this opportunity to thank my parents, my siblings and my extended family for all of their patience, car and support.
It’s great to see that Steps now also provide that support which is much needed for those diagnosed with Perthes as well as their families. I hope that my story can provide a bit of insight and a bit of comfort for anyone whose life is affected by Perthes disease.