To My Rare Bone Disease -- You Can Have My Legs, But You'll Never Get My Smile

Dear Fibrous Dysplasia,

Since the young age of 7, I have felt the presence of your existence deep inside of my bones. For years you tortured my left leg and ate my bone from the inside out, leaving your tumors behind as a reminder that you would never go away.

I was diagnosed at age 10 when I was just a young girl, completely innocent to the word “tumor.” For three years, we all assumed you were nothing more than just “growing pains.” Because all kids get them, right?

Wrong.

Flashback to 2000. I remember the day like it was yesterday. At this point, I was now limping and complaining of pain in my left leg every day. My brother needed a physical for school, so my mom figured she could ask my doctor what he thought was going on with my leg while we were there. Upon examining me, he thought the pain could be coming from my hips, since I was going through puberty at the time. He ordered an x-ray. That x-ray changed my life forever.

It took my doctor a long time to come talk to us about the x-ray. And at first, he only wanted to talk to my mom. Immediately, I knew that something was wrong so I demanded to stay in the room. He told us that they found tumors in my left femur. I believe we all started to cry when we heard the word “tumor.”

I wondered, “Is it cancer? Am I going to die? Will I need my leg amputated? Will my life ever be normal again?”

I remember the first time I ever saw what you looked like. My x-ray was hanging in the hallway outside of the room where my pediatrician told me what they found. My left femur bone was hardly even recognizable. You had destroyed any healthy bone I had with a massive amount of tumors. It was devastating to me.

That same day my mom had to drive me down to the city to be admitted through the emergency department at the children’s hospital so I could see a specialist immediately. I had blood work taken, more imaging done and spoke with more doctors and specialists than I could count. We finally got some answers.

The doctors told me they thought I had fibrous dysplasia, but it could only be confirmed through a biopsy. That was the first time I had ever heard your name. To be honest, since I was so young, I didn’t quite understand what you were. All I remember knowing was that you were a benign bone tumor disease with no cure and even though that sucked, I wasn’t going to die.

I would need to be on crutches until my first major surgery because you had eaten away so much of my bone that I could break my leg at any point and the doctors were baffled that I hadn’t already. I was told that without having surgery to place a rod in my left femur that I would be in a wheel chair for the rest of my life and would never be able to walk again. So despite crying to my mom the night before my first major operation, I got onto that operating table and fought for my life.

And I’ve been doing so every day ever since.

Since having my first major operation and the biopsy confirming that the monster that was inside of my bone was indeed you, fibrous dysplasia, my life has never been the same. For the first few years after diagnosis, you allowed me to have a semi-normal life, only coming out to haunt me with the occasional set back of not being able to participate in gym class. In high school, you came to haunt me again when the Scoliosis that formed because you caused me to limp for so long and made me so crooked that I needed not one, but two spinal fusion surgeries. Thanks to you, I was known as Back Brace Girl.

And to top it off, during my senior year of high school, you weren’t satisfied with the rod that had been placed when I was 10 and I was suddenly in pain again, requiring yet another reconstructive leg surgery where they placed a larger rod to stabilize my bone again. That’s right, thanks to you I had to walk across the stage at graduation on crutches to get my high school diploma on my 18th birthday.

I was surprised when you finally let me catch a break after high school, when I had a few years yet again of a semi-normal life. Four of them actually, with the occasional hip impingement pain you caused me from deforming my bone (thanks a lot, dude). I was able to find a job at a veterinary hospital where I was on my feet for sometimes over eight hours a day and I was lifting dogs and cleaning kennels and felt really good. Although you have given me a really hard time, I am grateful that you allowed me to have that experience for two good years.

However, once again, you stole all of that from me.

In January 2013, I woke up with an extreme amount of pain in my left hip. I hadn’t done anything out of the ordinary — I just woke up in pain, and it never went away. Since that day, you have been a constant pain in my ass (I mean leg). For months and months I searched for a doctor who would hear me and listen to my concerns. In a year, I saw around ten different doctors who all told me different things. You see, having you as a diagnosis makes things insanely difficult since you are rare. Not only that, but you affect everyone so differently.

Here are all of the things that you have taken away from me since then: my job, my ability to work and my ability to walk. You’ve taken away muscle, you’ve weakened my joints and my leg is permanently deformed with scars.

Here are all of the surgeries I have had since then: In August 2013, I had the rod that was replaced in high school taken out because my doctor at the time thought it could be infected. It wasn’t infected, and it made me worse. I then found an amazing doctor at Loyola, who is now my current orthopedic oncologist. In January 2014, he placed a 6-inch plate and screws in my left proximal femur and also did bone grafts. I recovered nicely from that surgery and was doing well for only a few short months before stumbling over a shoe in the middle of the night which brought on severe knee pain. In October 2014, I had a left knee scope along with biopsy and bone grafts to confirm that you had now made an appearance in my knee. And then most recent, in February 2015, I had the plate that was placed last year removed and had a new plate placed that goes from my hip all the way down to my knee along with 13 screws to support the entire hip, femur and knee once again.

Yep, you read that right. 4 major operations in a short year and a half. Thanks a lot, fibrous dysplasia.

Through this process I have learned that you have always been a part of me. The older I’ve gotten, the more I’ve wanted to become more educated about what you really are. Since the genetic mutation that causes you to form happens while in the womb, it basically means that you have and always will be a part of me. However, despite your constant presence in my life, I know that I am not you. I am Christina, and there are so many other amazing qualities that make up who I am.

For example, I love to write. I love to experiment with makeup. I absolutely adore animals, especially my huge pup, Zombie. I have an amazing family and an extremely supportive boyfriend. I love to read and I love doing anything that helps me explore my creativity.

I might walk with crutches, I might need surgeries for the rest of my life and you may have taken so much away from me, but you can never take away who I am.

You can never take away my smile.

Sincerely,

Christina Schulz

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.