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I’m a little angry right now.

Of course, the casts didn’t work. My hip never re-grew into a nice, smooth ball and socket, like the doctors intended.

Even the leg braces they put me into after the casts didn’t work. Those highly uncomfortable plastic and metal leg braces strapped around my thighs, which I wore faithfully for two years, which made me walk like a penguin, which caused me all kinds of social isolation and exclusion… yeah. They didn’t work.

Nothing worked. My femoral head stayed flat and cropped-hip-xraymisshapen, with a square-shaped acetabulum, for the rest of my life — and it continues to be as such, to this very day. Arthritis eating away at the measly amount of cartilage that’s left, causing bone-on-bone grinding with every single step I take. (I was diagnosed with arthritis due to Perthes at age 17. How’s that for a welcome send-off into adulthood?)

They say that the age of diagnosis contributes to the long-term prognosis (as in, the younger you are, the better your outcome.) But I was only seven when I was diagnosed with Perthes, which is still relatively young; so, WHY DIDN’T THE SURGERIES WORK? Why didn’t the casts, braces, and traction work?

Oh, and about “traction” — don’t even get me started. Try being a kid and being forced to lay on your back for hours, days, and weeks, with your leg suspended in the air by a boot held up by overhanging straps. Just laying there, your leg up, your body immobilized. I was so uncomfortable. So confined. So unable to move. I remember thrashing around in my bed, trying desperately to turn over onto my side, my stomach, SOME other position besides just laying on my back. But I was trapped there, at the mercy of that contraption. At the mercy of doctors and nurses, at the mercy of this treatment for this disease that I never asked for. Never wanted. And never got rid of.

To this day, I suffer constantly. People around me who don’t know me very well must think I’m pretty lazy. People on the street who see me walking very slowly, people who bitch on social media about “slow walkers” — boy, they must think I’m pretty lazy.

They don’t know that every single day my hip feels like a thousand knives stabbing me from the inside out. They don’t know that I have to calculate every single step in my head to ensure that I don’t “overdo it” by walking a LITTLE BIT too far, or a LITTLE BIT too fast, that day. They don’t know that if I DARE to overdo it one day, that I won’t be able to sleep that night because pain will be radiating from my hip, causing me to toss and turn and try to find SOME position to get my hip to the point where it doesn’t feel like what it actually is: a tiny, rotten little apple in my body. A joint that is soft, and cratered like the moon.

They don’t know that one wrong step, one extra movement, might send me into the dark abyss of a flare-up where, lo and behold, you won’t see me for several days because I’m at home, laying down, with my hip up on a pillow, trying to heal it just enough so that I can function semi-normally, yet again, for one more day.

They don’t know about the ice packs I must put on myself, even in the dead of winter, to try and cool the heat emanating from my left side. They don’t know that there is NO MEDICATION that helps, except for those which put you to sleep and make you even more non-functioning. They don’t know that their well-intended yet totally ignorant suggestions to “try acupuncture?” are completely useless because things like acupuncture and massage DO NOT WORK ON BONES.

And what they REALLY don’t know is that there IS. NO. CURE. FOR. THIS. except a Hip Replacement!

Oh, let’s talk about that hip replacement. Let’s talk about the fact that general society, including some doctors (!!!) think of hip replacements as being something for OLD PEOPLE. Let’s talk about the fact that every SINGLE doctor I’ve seen for my hip since I “aged out” of Shriner’s Hospital at age 18 has said, “well, you’re just going to have to deal with the pain until you can eventually have a hip replacement.”

Eventually have a hip replacement. Eventually have a hip replacement. It’s a mantra that goes through my head every day, a light at the end of the tunnel, calling me forward to it’s glorious conclusion — freedom from pain.

Freedom from pain? I can’t even imagine it. I can’t even allow myself to imagine it, because then I might just break down sobbing in front of you, imagining an end to the 30+ years I’ve been suffering in silence, looking simply “lazy” to all the able-bodied people who strut around with their normal lives, who are praised constantly for their physical accomplishments, who have no goddamned clue how lucky they are.

13 thoughts on “I’m a little angry right now.

  1. OMG…someone with my exact thoughts and feelings! Love how people (even doctors) tell me “if you lose weight it will help”. Guess what? Ive been overweight all my life because i have never been able to be active. Only someone who has had this will understand.

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    1. Eileen, I understand more than you know. It’s awful to be in too much pain to walk, yet be told to lose weight as though it were the easiest thing in the world. As though a multi-billion dollar industry wasn’t banking on the fact that it’s an incredibly difficult thing to do – even for people *without* physical limitations.

      I think people fail to understand that for those of us with Perthes, even being our most fit, healthy selves would not make our hips any less deformed. It would not eliminate the bone-on-bone grinding, the arthritis, the degradation of the bone and the cartilage. It might put less pressure on the joint, but it’s not a cure-all; it’s just a distraction from the real issue – which is our bad hips.

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  2. I am/was the same. I was born with bad hips, legs and feet. I developed perthes and my own brand of arthritis at 2 and had to “hold on as long as you can” for both my hip replacements. I finally got my left hip replaced in 2015 and right hip in 2016. If you know you need them replaced I say do it ASAP as you know you. I have the best orthopaedic surgeon who listens and knew that i was long past enough is enough. I still am 3/4 in a wheelchair as its not just my hips that suck but i dont have THAT horrid constant pain anymore. I still have arthritis and still have pain but waaaay less than I did. Before I got my replacement I was warned that they may not help ease my pain as everything with my leggy area is trial and error and Im so lucky it helped my BAD BAD pain bugger off. I was in hospital a week and a bit and then into rehab hospital a month as i needed longer to learn to walk and be medicated with the super good stuff as my ops werent straight forward. So much scar tissue and shoving metal bits in and the bone cutting 😑I wish you all the best and hope you get help to eleviate some of you naughty hips shenanigans 😘 xxx

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    1. Haha Kareena, thank you so much for your comment. “Naughty hip shenanigans” gave me a good laugh and I think it will be my new slogan to help me get through the extra painful times 😉

      I’m so sorry to hear you have ongoing leg issues in addition to the hip, but that is AMAZING that your THRs gave you some relief from Perthes pain! You are one strong woman and I appreciate you taking the time to respond! xo

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  3. I cried reading this! My son, dx’ed, at 6 1/2 now 12 is dealing with this awful disease. I hear him through your words. He has pain a lot as well, but still wants to be that active kid. There are days we have to change our plans because of his pain from the activity of the day before.

    I appreciate your words so much.

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    1. Thanks so much Stacy – I can’t imagine how hard it is for a parent to see their child suffer through all of this. He may be one of the lucky ones who heals and doesn’t experience much pain and limitation into adulthood… your love and support will help carry him through it all either way. xo

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  4. Hi Brandee I think we both must have gone to the Springfield Shriner’s the same time. I went through the 90’s, but they saw me until I was 22 having given me a final orthorogram before i was gone. I’m 40 now, and am also in serious pain from the wait and see approach. If you are still in western mass do you mind pm’ing the name of your local doctor. That is if you’d recommend them. Thanks for the read I can really relate.

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  5. Hi, my daughter had Perthes, diagnosed just before her 8th birthday. She has had a reasonable outcome, so can hopefully put off a hip replacement for many years yet. She is hoping for an alternative treatment to be found before then, stem cells… because she doesn’t want a major operation.

    I have to admit, that when I have seen people having hip replacements at a very early age (teens), I have privately thought “it’s too soon, replacements only have a limited life span, and can only be redone once or twice” but I have come to realise, why should anyone have to put up with that much pain, and surely it is better to have the replacement done while still young and can enjoy life.

    We lived in England when we went through our Perthes journey and were lucky to have one of the top surgeons in London. We even met Mr Catterall once, he was amazing. We now live in Ontario, Canada, although my daughter plans to move to Vancouver next year.

    I have sent her a link to your blog, she doesn’t know anyone, anywhere near her age who has this. She is 27.

    Take care,

    Annette

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    1. Hi Annette, thanks for writing. One thing that’s interesting about Perthes is that everyone has a slightly different outcome and there is no perfect course of action that works for everyone. While some people “heal” and have little pain into adulthood, able to lead relative normal lives, others develop severe arthritis and joint deformity from such a young age that they are left with nothing but chronic pain. Personally I’ve dealt with chronic pain since I was a teenager, and it has gotten significantly worse through my 30’s.

      As for the lifespan of hip replacements, doctors now say that with modern techniques and materials they should last upwards of 30 years.

      When thinking about whether or not someone is “young” to be having a hip replacement, it is important to think about quality of life. I am in my 30’s and yet I cannot take a walk, ride a bike, or chase after my toddler. I am in so much pain that I cannot walk up and down stairs and must take the elevator. Standing up from sitting hurts. Sitting down from standing, hurts. Shifting position in the night hurts. I look like a young woman yet I walk with a cane.

      So, to have a hip replacement and the prospect of living pain free during the prime years of life, is not only appealing, at this point it is completely necessary.

      Thanks again for writing in, and I’d be happy to chat with your daughter sometime! Not knowing anyone else with Perthes was always very isolating for me, and finding people online who can understand what I’ve gone through has been extremely helpful.

      -Brandee

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  6. I know exactly how you feel with the ‘you are far to young to have your hips replaced’ and ‘well if you just lost some weight’ rubbish that people give you with it. I had a nasty habit of turning around to doctors and asking them how exactly did they want me to do this??? after telling me not to exercise the hip joint. it’s amazing to read someone else who is female with Perthes, we are a rare breed. C x

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