My grandson, came home after an end-of-term exam and said:
“I don’t think I will have done very well in my Economics, my hand stopped working half way through”.
He is a keen guitarist and we thought it was “repetitive strain or carpel tunnel” so we went for tests, expecting a cortisone injection would do the trick. The doctor was confused as the symptoms didn’t match up, so thankfully (?) he arranged for an MRI.
This was to be the first of many.
He has NF2. What we thought was a “lazy eye” is a tumour. He has many tumours, the most worrying being inside his spine. As well as an accomplished guitarist, he is a “gifted” artist and NF2 has taken this gift away as he has little feeling in his right hand.
However, he is continuing with his Art A level, just adapting his paintings to BIG strokes on MASSIVE canvases. He is coping with his symptoms and, like many NF2 sufferers, is “waiting’ until the tumours are life-threatening enough to make major surgery the only option.
Hearing about NF2 BioSolutions pioneering research into gene therapy gives us HOPE at last – we need a CURE.
Cathy Baglin, UK