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First blog post

Hi, I’m Brandee. As you read this right now, I want you to think about your hips. Not the fleshy matter that makes up the side sloping curves at the middle of your body; I mean, your actual hip joints. The part where the ball at the top of your femur meets the socket in your pelvis. Can you feel them?

I can always feel them. Well, mainly my left hip. I have something called Legg-Calvé-Perthes-Disease. LCPD, or Perthes for short, is a deformity of the hip joint that occurs in young children. There are many theories as to why it occurs, but there is no one definitive answer. Because it is fairly rare (affecting approximately 1 out of every 17,500 children) it is not studied with the same level of resources, research and urgency that other, more common conditions are afforded. That being said, there has been more and more research published in recent years; more on that later.

For now, I want to tell you my reason for starting this blog. LCPD has, for me and so many other sufferers, been so much more than just a childhood disorder. It has been something that has affected my entire life. There are so many adults living in the aftermath of Perthes, yet for most of us, the medical community has largely ignored us after the age of 18. (More on that later, too.)

Because we tend to suffer in silence, having lived with the disorder our whole lives, we are an interesting hybrid of disabled/non-disabled; visible/non-visible. Obviously each person is different, and I can only speak from my own experience and reflect on stories I have heard from other survivors; but I know that for me, there is part of me that mourns the loss of a “normal” life and seeks to raise awareness of this disease so that others who have it, or whose children have it, can begin to find more community, common ground, and resources that can help with the tricky task of navigating life with Perthes.

I plan to use this blog to share my personal story of living with Perthes, as well as links to articles and information, and hopefully, as time goes on, stories from other survivors as well. Thanks so much for reading this, and please feel free to reach out to me with any thoughts, ideas, or questions!

-Brandee

12 thoughts on “First blog post

  1. Thank you for starting your blog. I look forward to reading it. I’m 45 and have been dealing with the aftermath of perthese for many years with like you said very few resources.

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  2. Love your blog. I’m 43 and a survivor as you say. Told I’d need a hip replacement by the time I was 30 and I’m still going strong. Looking forward to reading more of your story

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  3. Hi, Im Jean Pierre from Peru, it`s great to find a blog about LCPD, we have so much in common on how we deal with the disease as adults and as the children we once were. My best wishes to you and continue with the blog.

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    1. Thank you so much Jean Pierre, please keep reading and commenting! It means so much to me to connect with others around the world who understand and can relate to going through life with this disease. Hope you’re doing well and thanks again for reading! xo

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  4. Excellent blog. I’m now a 41 year old male who was diagnosed at 3 and had Perthes in both hips. I endured and masked it as much as I could , until I was around 32, when the pain started to become too much. I had bilateral replacement at 33, at the same time. It was the best decision I made and my surgeon was agreeable. Pain free was a dream, but now it’s reality. Keep up the blog. It’s a great read for us survivors

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    1. The words “endured it and masked it” are so incredibly poignant – they speak volumes as to what we go through. Thank you so much. I’m glad to hear your replacements have given you pain relief – enjoy it! I feel like it will be a whole new life… I can’t wait! xo

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