I remember the day vividly. It was 1990, and I was seven years old. My mom brought me to the pediatrician because I had a cold. While we were there, my mom mentioned (as an aside) that I had also been limping lately. The pediatrician watched me walk down the office hallway and immediately sent me off to get my first ever hip X-ray. There, the radiologist looked at my X-ray, and brought in another doctor. I remember the look on that doctor’s face: something was wrong, but he wouldn’t say what.
He sent us to yet another doctor, that same day. After all of that, my mom and I were already pretty exhausted by the time this third doctor told us “we’re going to send you to Shriner’s right away. Can you drive there now?”
Off we went. By the end of that very long and fateful day, my mom and I sat in the office of Shriner’s Hospital for Crippled Children, where we were told that I had a very rare hip disorder called Legg-Calvé-Perthes Disease. It was the start of what would be many, many years spent in and out of the hospital for hip operations, leg braces, and casts, and a lifetime of hip pain and limitations.
Now, nearly thirty years later, I am just beginning to tell my story. While LCPD is relatively uncommon, I’ve come to realize there are thousands of adult “survivors” like myself, living in the aftermath of this childhood disease. There are little to no resources for us. We are told that we will eventually need hip replacements, but are too young to have them; so we are relegated to spending the prime years of our lives beset by pain, misunderstood by and isolated from our peers who just simply… cannot… understand.
The challenges are vast. The pain is an endless sea. The limitations are frustrating. We strive to break through them, to be “normal.” To create our own, new normal. We have very few heroes, very few successful stories of survivors whose experiences we can look to for inspiration or hope. And there is very little support or understanding from the general population, who, for the most part, have never heard of LCPD and cannot seem to wrap their minds around a young person with a bad hip.
It’s difficult; but there is hope. We are NOT alone. If we are able to share our stories with one another, we are able to see that we have a community; that there are others like us, who understand what we’ve gone through. And hopefully, we can begin to bring LCPD out of the shadows and into the light of day.
That’s what I’m hoping to achieve by starting this blog, and I thank you from the bottom of my heart for being here to read it.