I am Jade and am 21 I have NF1, Hydrocephalus and Pseudoarthrosis.
Here is my story.... the short version.
My Parents knew something was up when i was born and at 12weeks I was diagnosed with NF1 and Pseudoarthrosis.
I had my first op at around 3years old, this is where they broke my leg put a metal rod in the bone to help keep it strong and straight. I spent 9months is in a plaster cast waiting for the bone to heal. It finally did....
Then had the same operation when I was 5 because of my age and i was growing they put in a longer metal rod.
No Op was needed on my leg until i was 17years old.I was having pain and after X rays and tests the Doc’s decided to removed the rod. They found that it had dropped a little and grating on my
ankle bone. The surgeon decide my leg was strong enough without anything in.
However Once I was recovered and back to my normal self, I was out walking with friends and had a fall, my leg broke.
So they placed a metal rod to make the bone stronger and straight.
Through there mistake the rod was placed to high so i wasn't able to bend my knee, so they operated again and lowered the rod.Since then no operations and was discharged.
I am now 21 and in Feb had an operation to break the leg and again straighten it, as ankle was turning in 35* and leg bowed. I recovered well and with the help of a Bone stimulating machine, the bone healed and knitted back together. I was back to work after 8months.
I know everyone’s leg is different and we are all going though different journeys amputation hasn’t been an option for me yet but i know this may be the case one day
But until then my journey goes on.......
Written by J.W. 19.10.10