Halesworth sufferer of a rare genetic disorder gives back
- Credit: Archant
A determined sufferer of a rare genetic condition has united with others to write an inspirational book sharing life stories.
Jessica Cook, formerly of Halesworth, was diagnosed with Neurofibromatosis Type 2 (NF2) aged 8, and like others with the condition, suffers from hearing loss, sight loss and mobility difficulties.
Along with developing the social advocacy group for people with NF2, Can You Hear Us?, the 23-year-old joined 43 others with the condition in recording their stories for a book, launched on July 13.
She said: “I created Can You Hear Us? as a way of giving a voice to people with NF2 and the book ‘NF2: Our Journeys’ has achieved just that.
“My idea was born through inspiration and with the vision of inspiring others to seek the good in bad situations.”
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Miss cook said: “Although my life outside of NF2 has always been full of fun and adventure it always felt like there was something missing.
“For so long I felt alienated and alone in what felt like a never ending battle with NF2. Even with the wonderful support of those around me, the feeling of being truly understood remained absent from my life until the day I met other people with NF2.”
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Miss Cook grew up in Halesworth, and lived in the town until February when she moved to Stowmarket, in accommodation designed and adapted for people with both hearing and sight loss.
She developed the Can You Hear Us group in January 2013, and quickly began designing the book, a collection of 44 life stories written by people with NF2 from around the world.
The books is available to buy from the Can You Hear Us? website www.canyouhearus.co.uk priced at £8.99 with free postage. UK Residents with NF2 can request a free copy of the book by contacting their NF2 nurse.