If you have an account please sign in to continue
Dialog Box
We kept saying to ourselves, "Why is our sweet little Carys being burdened with this awful genetic disease?"
Ellen is a bright, bubbly 23-year-old with a heart of gold. Ellen also has NF2, a rare genetic disorder affecting 1 in 25,000-40,000 people.
Isabelle was diagnosed with NF2 at the age of 16. Within months, tumours took away her ability to speak and hear.
Libby is a Harry Potter loving, NF2 hero, who dreams of being a veterinarian when she grows up. Libby also has Neurofibromatosis Type 2.
Kylie's a fighter. After surviving ovarian cancer as a teen, she was then diagnosed with NF2 as an adult.
"We had never heard of Neurofibromatosis and we were completely numb listening to the suspected diagnosis."
In 2007 at the age of 16, I picked up the phone one day and couldn’t hear the person on the other end very well. An MRI which revealed a ~30mm benign, acoustic neuroma.
I was diagnosed with NF2 at age 13 after experiencing a number of severe migraine headaches which left me on the couch for hours.
Being told I would need surgery was a huge shock following six years of stability. It was a realisation of the volatility of this disorder.
Share
