NF2: OUR JOURNEYS
A collection of life stories written by people with Neurofibromatosis Type 2
There is no manual about how to live life with NF2, but how much closer could we get than hearing from a collection of people who have already lived it, and are still living it?
Is it really possible to live a happy and fulfilled life whilst battling with a degenerative and sometimes life-threatening condition that currently has no cure? Yes, is the short answer. How do we know this? Because people all over the world are proving it.
What happens when a group of extraordinary individuals unite to prove this point? The answer: a timeless testimony with the power of a thousand horses.
WE NEED YOUR HELP
To make this project become a reality we need to raise funds to cover the production costs of the book. The ideal target is £2,000 in order to produce the desired amount of paperback copies.
Any donations large or small will be greatly appreciated and we hope that you can join us in helping to end the silence in which NF2 can bring.
NF2 (Neurofibromatosis Type 2) can be an extremely isolating condition because of its nature in being so rare. Feelings such as isolation and the absence of being understood can have major impacts on a person’s well-being. The book NF2: Our Journeys will be a resource for those being newly diagnosed with NF2, as well as those already living with the condition.
Every individual’s journey with NF2 is different, which is therefore why a collection of stories is likely to be more powerful than one single story in the hope that the reader is able to locate someone in which they can most personally relate to.
Although the central idea to share experiences is in no way breaking new ground, the notion of bringing those experiences together in an eternal edifice is yet to be materialised.
The book will be filling a gap since the amounts of resources on NF2 are limited. What does already exist comes in the form of medical guides or case studies, both of which fail to recognise, investigate or support the emotional and psychological needs of people living with NF2.
The book will provide people who are closely connected to someone with NF2 such as family, friends and carers, with a deeper understanding of the effects that NF2 can have on a person’s well-being so that they can offer the best possible support. It will also offer clinicians an insight into the effects that NF2 can have on a person’s well-being so that they can provide their patients with the best possible care.
This project is about pulling together as a community, the NF2 community, and working together to support each other so that we can achieve the highest quality of life possible.
With this book we have the opportunity and ability to inspire those who have doubts that they are still capable of having a good life in spite of the challenges that NF2 can bring. There is much more outside life with NF2, and this book has the potential to prove that. It has the potential to prove others, as well as ourselves, that while we may have NF2, NF2 does not have us.
Some facts about NF2
- Neurofibromatosis Type 2 (NF2) is a rare genetic condition
- It occurs in 1 in 35000 of the population
- The “spelling mistake” in the gene is found on chromosome 22
- NF2 is usually diagnosed by MRI scans
- In NF2 people develop benign nervous system tumours (lumps) typically in the brain and spine
- NF2 can cause hearing loss, deafness, and mobility problems
- NF2 currently has no cure
- For more information visit http://www.nfauk.org/nf/20