Paige's interview
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How did all start?
Though I was born healthy, as I started to grow, my mom noticed that my right foot was smaller than my left. She pointed it out to the pediatrician, who hadn't noticed. Several referrals to different doctors followed for a couple of years before she was told it was because of the deep hemangioma within my right foot. Unexpectedly, the doctor also discovered the Melo at this time, as it was all in the lower right leg.
Do you already have a diagnosis? How long did it take you to get it?
Yes, I have Melorheostosis in my right tibia. I'm not sure how quick it came about, but a doctor in Atlanta was able to diagnosis it through x-ray when I was 3.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I've been treated for discoloration of the skin, though the laser surgery was not helpful. I am treated for depression, anxiety, and panic disorder. My medication has changed so many times that I can't really remember at this point what worked best for me. It seemed like it was least bothersome at the start and has only gotten worse with the years.
What has been the most useful thing for you so far?
Usually my bone pain will come during the cold months, and I've found being warm helps to limit it. If I've overexerted myself and caused the bone to hurt, then I just need to rest for about an hour.
What have been your biggest difficulties?
It was probably being limited in what I could do. Everyone was always able to see that my right leg was different, thus they'd treat me differently from other children. Gym teachers would not ask me to participate in certain activities, band directors didn't want me to march, and my doctors wanted me to limit my physical activity.
How has your social and family environment reacted? Have your social or family relationships changed?
After learning that I had Melo, my parents were shocked. They were told that I could one day need to have my leg amputated because of severe pain. It was a hard pill to swallow for two young parents. Growing up I didn't think they treated me differently from my older brother, but we had to frequently make trips to doctors. My grandparents thought it best to have their church pray for my leg to be healed. And when we were a bit older, my older brother became resentful of my disease. He said it made our parents baby me, whereas he was always being told off.
What things have you stopped doing?
When I was 11, my doctor told me I could no longer play softball. I'm not likely to walk very long distances anymore without major pain in my bone.
What do you think about the future?
I'm not sure there will ever be a cure for this disease, but I am aware and thankful that mine is mild. Unlike others, I do not suffer from constant or daily pain. I am afraid that the disease will limit my romantic life and wonder how it will progress with time.
So far, which years have been the best years in your life? What have you done during them?
From ages 17-22, because I started getting away from home and thus, the overprotectiveness of my parents. I went to college (and still am going), and gained new experiences with people who didn't want to limit what I did.
What would you like to do if you didn’t have your condition?
I always thought that I would have liked to be a ballerina.
If you had to describe your life in a sentence, what would it be?
Paige lives a rather mundane life, but she's always been told that her right leg makes her a bit special.
Finally, what advice would you give to a person in a similar situation?
Don't let other people limit you physically. You know what your body can handle. If you want to play softball, you play. Doctors don't know everything about this disease. My case is going to be different from yours, but that's okay. We're both going to be learning about it throughout our lives. It may be painful or isolating at times. But it's okay. That's how life goes at times. And we're going to be alright.
