Originally, this site was created to tell the story of my life with the chronic illness that I was diagnosed with at 12 years old.
So, two days ago, I opened up Microsoft Word and started to explain that in the middle of my 6th grade school year – – in January 2007 to be exact — I was diagnosed with a disease called Fibrous Dysplasia (FD). It was found in the right side of my face and upper skull. I went on to explain that less than two months later (March 2007), I had my first facial reconstructive surgery.
A CT image of my skull and the surgery in 2007
I was 12. I typed out the details of my surgery – they cut me from ear to ear, pulled my face down, shaved back the FD, and then took a piece of my left rib and built me a new eye socket.
I added a definition of the disease: “Fibrous dysplasia is an uncommon bone disorder in which scar-like (fibrous) tissue develops in place of normal bone. This can weaken the affected bone and cause it to deform or fracture.” –Mayo Clinic
That is as far as I could get in my life story. It’s as far as I usually get before I draw a blank on the specifics of the diagnosis, the surgery, and the recovery.
It’s been ten years, and when I talk about that time what I remember is the relentless bullying that took over my school year. I remember how small people made me feel, I became embarrassed in my own skin.
If you know me today, you know that I am one of the biggest advocates for not letting this awful disease control your life or how you feel about yourself. So why would I let people control me in such a way? Why would I let myself begin to feel so ashamed?
Let me make this very clear, if I could go back in time and change how I felt, I would not. The people that bullied me like they did taught me some very important lessons, most of which we won’t discuss now.
The most important lesson I learned then was that it doesn’t matter what anyone thinks of you. You just have to care about yourself. And once people see you taking care of yourself first, they will follow, beginning to treat you as you deserve to be treated.
One of the “problems” with Fibrous Dysplasia is that it’s not a visible disease. It’s rare and it’s often subtle in the exterior signs of the condition. In short – people around me don’t know I’m sick. They don’t know I’m in pain. They don’t know what FD is and they can’t empathize with my hidden condition.
There are people who have FD and other “invisible diseases” who don’t want others to know that they are sick, and I can relate to that. Because I know FD, I’ll address only it.
What I want people to know who have FD is that, yes you are sick and that is never going to change. And there are days that you won’t be able to keep up with those around you, but that is okay. Learn to embrace this, all it is is an obstacle designed to make you stronger than you ever imagined was possible. It’s like the saying goes, “those who mind, don’t matter, and those who matter don’t mind.”
If someone is being harsh toward you about FD, take their negativity and make something great with it. Become an advocate not only for yourself, but for others battling the same insecurities that you are.
To date I have had three facial reconstructive surgeries and two bone graphs. I receive negative comments about FD and my life everyday. I get asked why my husband stays with me, when he could find someone that he doesn’t have to help take care of. I won’t lie to you, I have my days that the negativity gets to me, but the further I get in my accomplishments the more I can let the rude comments roll off my back.
Today, I spend my time running a nonprofit organization that I founded called FD Warriors. FD Warriors helps those affected by FD pay medical bills. I send out monthly newsletters and I run my own website (www.fibrousdysplasiawarriors.com). I am a part of a support group that consist of almost 2,000 members that either have FD or who love someone living with FD. They are from all over the world.
What I am doing with FD is my dream, I am helping others and to me that is making a difference.
This disease is how I am going to change the world.