My journey with this condition has been a long one – spanning over 30 years. I was one of the very unlucky ones diagnosed young – at age 11.
First, I had thick white patches of skin on thighs, which then jumped to my feet. This started at the age of 9, however as I was so young – it took 2 years to actually diagnose.
My high school years were the hardest. The disease overtook my body and basically from my shoulders to my feet had become thick and taut. My elbows had become fixed in a bent position, and my fingers were so curled up that it was difficult for me to hold a pen. Yup – homework was a drag!
I remember the intensity of treatment and physio being such a grueling affair! On top of trying to keep my grades up, my Dad worked with me every day of the week for 2 hours of exercises and stretching so my arms would straighten and I could bend my knees.
Then one day – I fell on the way to school running for the bus. The impact of that fall was something I lived with for the next 20 years. If you can imagine what happens to hard skin when it collides with the ground – it splits! Not so simple to stitch taught skin back together – as it just splits more. It never healed.
After many years of repeated infections, skin grafts and major surgeries ….. I had to say good-bye. The life of a bilateral amputee is so much better than living with the effects of Scleroderma as I did for so many years.