#MyPerthes: Living With Perthes Disease

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.

Advertisements

20 thoughts on “#MyPerthes: Living With Perthes Disease

  1. When it comes to my hip, everything that could go wrong did go wrong. I was born with hip displaysia but it wasn’t detected until I was walking at age 1. I had osteotemy surgery then, which limited what could be done when I developed Perthes. If the doctor told my parents I should be restricted, they did not share that with me, and I was a very active kid, even though I didn’t walk the way everyone else did, I couldn’t move my left leg the way everyone else did, couldn’t sit criss-cross applesauce, etc.

    I didn’t actually know about the Perthes until I was an adult. As I hit my teen years, the pain got much worse and I started self-limiting because it hurt to walk. When I was an adult, I was in a car accident and my left knee slammed into the dashboard, at which point another xray of my hip was done, and that’s when I found out I also had Perthes.

    Orthopedists told me to wait until I was 40, come back, and they would replace my hip. But I went back at 42, had xrays, a CT scan, and found that the doctors all felt it was too risky to replace my hip – the femoral head is facing the wrong direction, the danger to my sciatic nerve was extremely likely, etc.

    The blessing is that I developed ankylosing spondilitis in my left hip joint, which basically means the joint is fused, it’s not moving, and it doesn’t really hurt anymore. I have a disparity in leg length over a little over an inch, but I have a built in lift which has greatly diminished my lurching limp. So this is what I’m stuck with, but it won’t really slow me down any. I won’t run any marathons, but I might walk a few 5Ks.

    Like

    1. Maureen, your story is one I’ve heard several times – diagnosis delayed until later life. I wonder how this happened with what seems like regularity. I’m glad you’re not in any pain, and that you manage day-to-day. Thank you so much for sharing your story with me.

      Like

  2. My daughter is 21 and reading your story is like my daughter telling it! She’s in constant pain but has no help and can’t or won’t give in to it! We are from south Wales UK and doesn’t know any other adults with the problem as the ones we knew of all are pain free now but we all young boys on diagnosis, abbey was 7 when she developed a limp and her story mirrors your since ,she is on constant pain killers and also has had injections into her hip .she is a courageous young lady who in her words don’t know what it’s like to wake up without pain.

    Like

    1. Maria, please do tell your daughter to get in touch if she wants to talk about it! I don’t know any other adults in my situation either, so I’d be glad to chat to her. I’m glad she’s able to continue on as much as possible, despite the pain she has.

      Like

  3. Hi Vikki,
    My name is also Vikki and I’m 25, I got diagnosed with Perthes when I was 5 with perthes in both hips. I had plates put in and was in traction for a while then, like you, I was not to participate in any impact excercise. I didn’t really do PE until I was about 11. Like you also I don’t class myself as “disabled” but I do live with Chronic pain. It’s really hard to explain to someone why you can’t go to a festival or a day out which will involve a lot of walking. Even close friends i have had for years sometimes forget I can’t be on my feet for long periods of time.
    I also find when I’m feeling run down or ill that the pain intensifies. I’ve been to see the doctor recently who has said they may be able to operate to relieve some of the pain as my hips are positioned wrongly. I have no idea if they will even try this surgery now especially with all the nhs cuts!
    Your story sounds quite similar to mine, i find it funny that the nhs won’t class us as disabled as it really does make life hard sometimes!

    Like

    1. Hi Vikki! (Great name btw.) Thanks so much for sharing your story. I hope your surgery does go ahead! Do you know where it will be? The specialist in Birmingham does something called hip resurfacing, which is supposed to lengthen the amount of time before you need a full replacement, and is meant to help with pain. But mine doesn’t need any surgery at the moment, apparently. According to recent X-rays, my joint is as normal as it could be, given that I’ve had Perthes. But my pelvis is out of line, so my physiotherapist has been helping me to realign it. Which is painful to say the least!

      I think the worst part is the constant pain, and how it affects even the smallest task sometimes. Are you on any painkillers? I haven’t found one that works well enough yet, so I just battle through. I was in a lot of pain last night, so I had a hot bath, which did help soothe the muscles, but it’s frustrating that everything you do is just a quick fix. I’m feeling okay right now, but in an hour, a day, a week, the pain could be back. I totally agree with you – but applying for disability just isn’t worth the hassle, especially with the current government!

      Where are you based, if you don’t mind me asking? I’m in Hertfordshire.

      Like

      1. I live in Bristol. Luckily the children’s hospital in Bristol took me on and I never had to travel far for operations when I was younger. I’ve been to the BRI in Bristol this year and they have told me that I may need to travel to London to see a specialist but that was in September and I am still waiting to hear anything!
        I tend to take Paracetamol and Ibruprofen but yeah sometimes it doesn’t really touch it! Sometimes a hot water bottle seems to help but only slightly.
        I feel your pain it’s very frustrating! I went to see a specialist a few years back cause I was doing a physically demanding job and I was struggling as my employer wasn’t exactly sympathetic about my condition (to put it lightly!). The specialist then was really blasé about it and said to me “you have to realise you’re not going to be running marathons”. I was like I don’t want to run marathons I just want to do normal things like go to festivals or have a night out dancing without being a cripple the next day! Do you pay for your physio if you don’t mind me asking?
        I haven’t really done much about my hips for quite a few years because I got fed up of being told to pretty much get on with it. I’m definitely going to try and be a bit more proactive with it now!

        Like

      2. I got it on the NHS, but managed to go to a private hospital, so I’m very lucky! I only got 6 months of physio at an NHS centre back when I was 18, which is nowhere near enough. I’ve been going for a year now, and the consultant says I can carry on as long as the NHS is happy to pay for it, or if they stop and I can pay for it (which I’m hoping doesn’t happen any time soon!). I started by going to my GP during a particularly painful time, putting my foot down, and doing a choose-and-book, but only with all local hip specialists. It might be worthwhile for you too!

        My physiotherapist says the same to me, but I know what she means. She told me not to do any heavy lifting, but books don’t pack themselves, so I had to, and I’ve damaged my back, on top of everything else. I was having problems with it anyway, due to my pelvis, but I’ve definitely made it worse. And she gets that I just need to be able to do things for myself. We all do, as far as we’re capable.

        If you ever want to chat more privately, feel free to find me on Facebook!

        Like

  4. Thanks for sharing your story. I was diagnosed at 13 and was a competitive gymnasts. It took six months before doctors were able to determine what was wrong and when I was finally properly diagnosed it was heartbreaking. I was told to quit gymnastics and stop all weight bearing activity. I did the latter but not the former. I found ways to stay active that didn’t involve moving or landing on my hip.

    I am now 30 and have spent more than half my life with this constant feeling and awareness in my left hip. Being that I was older when I got Perthes, the femoral head never grew back. I basically have half of a left hip and it is very deformed.

    Perthes is such a crazy condition. During the past 17 years that I’ve been living with it, I have had moments of wonder about others who are living with it and so I start searching the internet for people’s stories. It is always wonderful when people are essentially able to fully recover, though I am unable to relate to that. The reason Perthes is such a peculiar disease is because the results vary quite a bit.

    I am thankful that I am able to walk. I have a limp, which is annoying. I don’t like seeing myself on video or in reflection of clean or mirrored windows, because of my limp.

    Being that I am a former gymnasts, I still have the physic, which can be deceiving to people. I can still do handstands and back handsprings (landing on my good leg), though I can’t ride a bike because I lack the range of motion. I have no outer motion and forward motion is limited, maybe 20 degrees, then I start to cheat by lifting my pelvis.

    I am fortunate that I do not need to take any painkillers. There are times where the “pain” (I normally define it as a “feeling”) is stronger than others and the stiffness is more severe. I feel like an old woman. I avoid sitting, because it is painful. I spend my day standing at work, then when I get home I lay on stomach in bed with my laptop.

    I have a disabled parking pass as the doctor told me years ago that I only have so many steps left in my hip, so I should use them wisely. I don’t use the pass.

    I haven’t had a hip xray or been to the doctor concerning my hip in 9 years. I was always told it is a self-limiting disease. I know there is nothing a doctor can say or do to change my condition. My only option is a total hip replacement and I am not ready for that at the moment.

    Like

    1. Thanks so much for sharing your story. I agree that it is a self-limiting disease, to a point. There are always limits to what anyone can do, and I’m better since I’ve learned my boundaries. I’ve found there’s little point in pushing myself too far, and paying for it for days or weeks afterwards. I learned that the hard way!

      Painkillers don’t tend to help me – Codeine (and other strong medication) does work, but it leaves me useless, unable to drive, work, or concentrate on anything. It also gives me other health issues, so I just don’t think it’s worth it. A hot bath has been soothing recently, but only temporary. I wish I could find a longer-term solution! I’m glad to manage to get along well enough. I hope you’re able to get treatment when you need it.

      Reading all of your stories has been fascinating; thank you all so much for getting involved & raising awareness for Perthes. If you’re on Twitter, don’t forget to use #MyPerthes, and @VikkiPatis.

      Like

  5. So sorry to read about the pain you have all experienced with Perthes, I was also born with this disease in one hip. I grew up in Aberdeen, Scotland, Perthes was diagnosed at age 4. I was in hospital for around 5 weeks in traction, this was followed by 2 years of wearing a calliper – name calling obviously followed – just as well I’ve broad shoulders!! The surgeon at Stracathro Hospital in Brechin was excellent, I’m now 46 and have cycled competitively and ran a half marathon a couple of years back – the latter perhaps not the most sensible thing I’ve ever done. I try and watch my weight and swim regularly – I do believe this helps keep pain at bay. Only after reading these posts do I recognise how lucky I have been, I’ve always know that one day a hip replacement is probable however as technology improves I’ll try and push that out as long as is possible. My thoughts are with you all!

    Liked by 1 person

    1. Hi Graeme! Thanks so much for taking the time to tell your story. I’m glad your experience hasn’t been too awful! Congratulations on the cycling; I’ve been told that it can be a great exercise for the hip. I would love to get my weight down and my fitness up, but the level of pain always puts me off, and my physiotherapist and doctors always tell me not to push it. But I wonder if I’m doing more damage by letting it go on as it is.

      I wanted to start pilates or something, and maybe an exercise bike would be a good idea, but there’s always money involved! Perhaps someday. I’d love to do something I never thought I’d be able to do; I’m so pleased to read that you haven’t let it beat you.

      Like

  6. Hi Vikki, your story is so familiar, you’re not alone and I hope that helps you to feel better. I’m 44 now, but was diagnosed with Perthes at 6, in those days the medical profession favoured surgery but only after 18 months to 2 years of wearing abduction splints. Perthes pretty much robbed me of my childhood, as it did to many other sufferers and I spent most of my time in hospital being pulled about by nurses who had absolutely no understanding of how to deal with children who were in pain. Like you I am in pain every day, sometimes it’s worse and stops me in my tracks, other days I can get about despite it. I ended up having 5 operations on my hip and they also slit the inner thigh muscles in an attempt to improve hip movement, none of them worked. I am aware that my next step is to have a hip replacement, however, my attitude is that it’s my condition and I’ll deal with it as I see fit, I’m the one who’s had to live with it, so have decided I’m doing it my own way and if the medical profession aren’t keen on that decision, they can lump it. I agree with you, Perthes should be given more respect as a condition which causes a great deal of distress and pain.

    Liked by 1 person

    1. Thank you Shelly. All of those operations sound horrendous! I’ve recently been told that my hip dysplasia is mild now, and an operation such as a total hip replacement wouldn’t be on the cards for me any more. So I really don’t know what the next step is!

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s