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!