I’m currently sat at work, in excruciating pain, counting down the minutes until I get to go home, lay on my bed and cry. I was diagnosed with Perthes disease when I was 4 years old, and I’ve been in pain ever since I can remember.
Not many people have heard of this condition. To put it simply, it’s a childhood disorder where the blood supply to the femoral head becomes inadequate, and the joint softens and begins to break down. This can happen in either or both hips, and is, apparently, more commonly found in children between the ages of 4 and 8, although it can occur at any time between 2 and 15, and it’s not impossible for people to be diagnosed at a much later age. It is unclear on what causes Perthes, and the treatments and prognosis also vary.
My diagnosis came after I developed a limp, and my left leg suddenly began giving way. I was sent to Great Ormond Street Hospital in London, where I went for countless X-rays, check-ups, and discussions, which I largely don’t remember and probably didn’t understand. I’ve since learned that my hip was, at its worst, in seven pieces, and gradually healed over the course of my childhood. All I knew back then was that it hurt, and I couldn’t do the things everyone else my age was doing.
They used to operate, or treat children with plaster casts or braces, but, by the time I was at the hospital, it was decided that they would use the ‘wait and see’ method. My physical activity was restricted – for a time, I wasn’t allowed to do PE at school, and instead sat on the sidelines reading books. After a few years, I was allowed to join in, but I also had the option to sit down when the pain became too much. The point of the ‘wait and see’ method is that, in most cases, the femoral head will heal itself over time, and the end result will be a relatively normal joint. Unfortunately, it didn’t work that way with me.
When I was discharged from GOSH at the age of 16, I was told that it’s unlikely I’d ever be able to carry a child to term, and a natural birth would be difficult, to say the least. I was also warned that I would need a hip replacement by the age of 25. I’m turning 24 this month, and my prognosis is much better. Since seeing a consultant at a private hospital, I’ve been told that I’ll need a hip replacement a bit earlier than the general population, possibly by the age of 50. The femoral head is almost normal, although it still shows evidence of Perthes, and is now referred to as hip dysplasia. My physiotherapist has been amazing, teaching me ways of strengthening my hip and managing the pain, but it’s not always easy. I’m glad she has a lot of patience with me; not everyone does.
As it is, I have trouble walking and standing for longer than a few minutes at a time, so any strenuous physical activity is completely out of the question. As well as my hip, I get pain in my back, pelvis, knees, and ankles. The muscles in my legs ache, especially after physio, and I use a foam roller to give a deep tissue massage to the muscles in my outer thigh fairly regularly. I’ve never been able to cross my legs, and the mobility in both hips is extremely restricted. The pain, as previously mentioned, can be debilitating. It makes me nauseous, causes me to walk even more stiffly, and I’ve even had to buy a walking stick for when it’s really bad (but I don’t use it very often, because reasons). However, things have improved over the past year. These bouts of severe, crippling pain don’t occur as often as they once did, and I know ways of dealing with it when it does come along.
The worst part, for me, is the lack of understanding. As a young woman complaining of hip pain, I’m used to being dismissed or ignored. Doctors and consultants have fobbed me off, simply telling me to take over-the-counter painkillers for the pain (lesson: they’re nowhere near strong enough, and stronger painkillers like Codeine are just awful), or, even worse, that the pain is all in my head. Because pretending you’re in agony and having to give up things you love or sit out of activities you enjoy is fun. Even friends and family members have ignored my pleas to sit down or walk slower, or they’ve gotten annoyed at my refusal to join in with an activity because I, quite simply, physically cannot do it.
The government doesn’t classify me as disabled, and, to be honest, neither do I, though for very different reasons. Of course I could do with some help, but I pride myself on being able to do everything I can, by myself, or with a little help from those around me. I was a stubborn teenager, and refused to let it affect me or my activities (but it still did, despite my best efforts), but, now I’m older, I know my limits, and I rarely push them. And yet I still live with chronic pain. Every day presents challenges – from little things like climbing stairs to sitting in traffic, to bigger things like moving house or walking around London for a day – and I have to tackle them as they come. There’s rarely any rhyme or reason to the pain (except when it’s obvious I’ve done something to push it), it just comes and goes, and I have to wade through the middle part as best I can. Sometimes it’s bearable; most of the time, not so much.
There’s very little information out there on Perthes disease, let alone about what it’s like to grow up with the after-effects. Many sufferers recover almost completely, and live relatively pain-free lives, although they may have some difficulties in later life. But, for the unlucky few, the pain remains, and it’s a daily battle to ensure you don’t succumb to the desire to hide under the duvet and stop fighting.
Perthes might not be a disease in the traditional sense of the word, but it most certainly is a condition that affects you in many ways. I want more people to understand it, for more research into the impact of various treatments to occur, and for it to be widely recognised as a serious condition.
If you or someone you know has had Perthes, let me know your story, in the comments below or on Twitter, @VikkiPatis. Please use #MyPerthes to help raise awareness across social media.