I Ran Today, My Bones Did Not Hurt

It may not sound like something to shout from the rooftop, but for me, it is a day to celebrate.

I was born with an endocrine disorder called McCune Albright Syndrome. Along with a host of various endocrine abnormalities, part of this syndrome is a bone condition called polystotic fibrous dysplasia. Affected bones are replaced with a fibrous matter rather than healthy bone. An over accelerated osteoblast with a dysfunctional osteoclast cause an overgrowth of weakened fibrous bone.

The first symptoms of this disorder appeared when I was five. My first surgery was when I was sixteen. Five years ago, a bone scan showed accelerated involvement of my vertebrae, along with other increases in boney lesions. I was not surprised. I could have told them which bones were involved by the pain. Walking was becoming harder, I knew something was up, yet it is sobering to look at the hot spots on the scan and connect the dots of pain. It is sobering knowing the pain is just a symptom of a malfunctioning process destroying the skeletal structure. Clearly the infusion therapy I endured for over ten years was not working.

People live with the reality of losing mobility every day. Frankly, my case of fibrous dysplasia is mild compared to the ravages this disorder can wreak on a body. In facing escalation of the boney lesions, I thought about the future, a future different than I imagined previously. I was thankful we built a single story home. I was thankful I had my sons in my twenties and they were grown. My list of ‘reasons to be grateful’ was long. So was the list of ‘disappointments.’ Carrying my second granddaughter had become difficult. Riding in a car, excruciating. Walking on pavement, forget it. Walking on soil, I was too young for a cane, so I opted for a walking stick. Tim graciously carried my camera when we were out an about. I began preparing for that future.

Even though I was preparing for the worst, I sought a second opinion, and from there another, until finally I tracked down a physician who I hoped could stop or at least slow the boney deformations.

Late last year I began a new medication. Within a few months, my bones were quiet and I could walk on the soft soil without the aid of my walking stick. And today, six months later, I ran. Not far, only about twenty yards to and from, but I ran without wincing and without pain.

Blissfully, giving thanks.

fibrous dysplasia

Comparison: lower wrist has fibrous dysplasia, upper wrist is normal.