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On Being an Adult with a “Childhood Disease”

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I can’t tell you how many times I’ve heard “you’re too young to have hip problems!” in my life. People are so very predictable. I’m not sure where this notion originated that hip problems are only for the elderly. People can have all types of problems. We all have problems. Problems, problems, problems all day long. And while I don’t expect everyone to understand my hip problem right off the bat, I’d rather not have to deal with this particular gut-punch of a statement every time someone finds out my hip hurts. “You’re too young to have hip problems!” Ugh.

The International Perthes Study Group describes the Long-Term Prognosis for Perthes as follows:

“[It] depends on the shape of the femoral head and how well it fits the socket at the time of skeletal maturity (approximately age 14 for girls and age 16 for boys). If the femoral head is very flat or irregular and does not fit the socket well, there is a high chance of getting degenerative arthritis and need for a hip replacement as an adult, even as early as the thirties and forties.”

It’s important to me that this does not get lost in the conversation around Perthes. For the longest time, it was impossible online to find someone talking about a “bad” outcome. Everyone talks about good outcomes – the “healed stage.” And of course they do! Good outcomes are great! I don’t begrudge anyone a good outcome. I wish everyone could have a good outcome.

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But the reality is there are a lot of us who don’t. There are a lot of us who live with pain and limitations from the time we are children all the way until we are adults—until we take that inevitable plunge into having a hip replacement. Our whole lives are colored by this particular affliction. And that, I believe, is a unique story that needs to be told. These are conversations that need to be had.

Everywhere online, you see the words “childhood disease” associated with Perthes. There is a huge implied assumption that Perthes only affects children. But what about when those children grow up? There are thousands of us who had this “childhood disease.” And guess what? We grew up. And we still have it. Where do we fit into the conversation?

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There were years, between the ages of 18-30, that I didn’t even say I had Perthes. I made up other names for it. Bad hip. Arthritis. Deformed hip joint. Degenerative hip joint. Whatever. I tried to name it in a way people could understand. Because I felt I didn’t own “Perthes” anymore. What I had was somehow the aftermath of Perthes. It’s like a nuclear bomb went off in my body and all I was left with was the fallout. Over time, it became easier not to talk about it at all. To pretend like nothing was wrong and I was just fine.

That all changed for me over the past couple of years. As my hip health started declining and it became eminently clear it was getting worse rather than better, I started to realize that it was time to own Perthes once and for all. It was time to stop pretending everything was ok, and actually talk about what it has been like all these years. Stories from childhood, as well as the realities of adulthood.

I think it’s going to take all of us adults with Perthes talking about it to make a difference. It’s going to take speaking up, rather than staying quiet.

My plan eventually for this website is to begin to publish stories from other people with Perthes, in addition to my own. I’ll have more info on that, later. In the meantime, if you’re interested in writing your story or being interviewed, please use the contact form to let me know.


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One thought on “On Being an Adult with a “Childhood Disease”

  1. Hi! I have Perthes disease as a adult as well and have been struggling with pretty much all the same things you have been describing, I spend all my time just saying my hips are just broken really 😂 I’ve started a blog as I’ve got nerve damage with mine, have you had any trouble with hypersensitivity? X

    Like

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