The story of Pam
I would like to thank everyone for making this day available to those of us who suffer from a rare disease. When I was five years old, over fifty five years ago,I fell off my bike. My mother took me to the hospital because she noticed something didn’t look right with my left elbow. Low and behold,that was the beginning of my life with this rare disease. I was shipped off to the head pediatric surgeon in NYC. They diagnosed me eight eh same disease as my ortho in Toronto. This disease constitutes the growth of bone Spurs or benign tumours all over my body. As these Spurs grew those that were hitting nerves therefore being excruciatingly painful had to be removed. Luckily they were not malignant (always trying to find the good in the lousy). As I grew so did the tumours, leaving me to face numerous surgeries. My life during my school years and well into my teens always included many months recuperating from surgical procedures.
My life was not an easy one. No one knew anyone with my disease. As I lived my life I learned how to live as regular am life as I could.
I ended up having three children,that in itself a miracle due to my differently formed body structure. Unfortunately I never knew the correct genetic structure of the disease. By that time there was only one journal written about the disease and that was in 1964, when I was eight years old. I had no idea that I had a fifty fifty chance of having a child with the same disease. My youngest drew the small straw and got the disease. Luckily my son did not live the life that I did and to date at the age of thirty three he has only had two jouts of surgery. He lives a very fulfilled life,does anything he wants to,versus my life, not being able to do much of childhood activities.
To me the upside is that I could have had all three children. I am beyond grateful that did not happen.
To date I have never met anyone with the same disease. It would be very interesting to be able to do so.