Starting Over:
My dream as a child was to escape my traumatic upbringing, which l did when l was 15 years old. So l ran away to London from my home in Bolton, Lancashire, and didn’t go back for a very long time. Looking back l realise l was trying to “save myself”.

Both my mother and one of my sisters had/has schizophrenia, and my other sister had Down’s syndrome. My home had become intolerable to me. I still think of my family home with trepidation… Sad but true…it still exists in my memory as “the house of horror” – never forgotten.

I had numerous escapades after my arrival in London, l won’t go into these now. Later in life, l became obsessed with social dancing and spent much of my leisure time dancing – swing, jive, salsa etc. I loved to dance and it soon became my raison d’etre.

I thought I had escaped the genetic whirlpool that is my family, but then, in 2012, I was dealt a major blow. I was diagnosed with “probable” CMT type 2 – or Charcot-Marie-Tooth – at the National Hospital for Neurology and Neurosurgery (NHNN). I would become disabled. How would l cope without dancing?

Raising Awareness:
I became a social worker later in life; in Buddhist terms, l was “taking on the appropriate karma”. Eventually, the job became untenable due to both financial cuts/austerity and the progression of my disability, forcing me to retire.

After retirement (at 66), the transition to becoming disabled led me to also becoming anxious/depressed for a while. My friends and family kept asking “what’s that neuro thing you’ve got again?” – this became a refrain which really started to get on my nerves (forgive the pun). I decided to make a film about Charcot-Marie-Tooth, to explain.

Two years later, l had got the one-minute film made, and l organised the “world premiere” in The Jubilee room in parliament, with the help of my local MP. http://cmt.org.uk/video/

That was the beginning of my personal quest to raise awareness of CMT. I made a calendar in 2017, with pictures of 14 people with CMT, and a positive quote from each about life with a disability. I also provide presentations to health professionals about what Charcot-Marie-Tooth is and what its effects are.

I feel a one-minute film on each, would make such a difference. Telling the viewer, quickly and succinctly, about the disease and its main effects. Accurate diagnosis, and increased awareness generally, would make such a difference to so many people.