How Neurofibromatosis Type II Took My Hearing, My Sight but not my Fight

August 3, 2015

I have neurofibromatosis type 2 (NF2) which is a rare genetic disorder affecting 1 in every 35,000 people.

No one else in my family has NF2, mine happened through a gene mutation. I was born with it but not aware of it or diagnosed until I was 16, not long before I took my GCSE exams. The first thing I noticed was a lump on the back of my head and then I began to lose hearing in one ear and my balance started to go (I was a keen ballet dancer and noticed it more readily than most probably would.)

These symptoms led my GP to send me for a CT scan and, following that, an MRI scan which found two pretty massive benign tumours growing on the acoustic nerves behind my ears. I was then referred to a NF2 specialist doctor at a hospital two-hours away from where we lived.
Since then (over 20 years later), I have had many surgeries (some up to 18 hours in length and other smaller ones on tumours growing on my central nervous system, on my eyes and my bladder). By the time I was 21, I was profoundly deaf in both ears and learnt some British Sign Language at that time. I have now lost significant sight too, due to dry-eye related corneal damage and I walk with a rollator as my balance is very unsteady. Until the damage to my eyes, I ran a business teaching BSL and Disability Equality. I am now retired and published a book about my experiences in life called Catch it Anytime You Can.
NF2 is a degenerative illness and I have learnt in life that living with it necessitates a large capacity to adapt to new challenges. I have found learning to sign was invaluable (and, indeed provided me with a career teaching it). The best support and encouragement I get is from other people with NF2 who can really understand the ups and downs linked to this illness and share the emotional impact of acquired disability. In recent years, I have been involved with a group called Can You Hear US? (CYHU) set up and run by and for people with NF2. I really value the friendships I have made through CYHU with people who can truly understand that, though you can’t choose what life will deal to you, you can choose how you deal with it.

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