Book / research plans

I'm so excited to finally share that I've started writing what I hope will eventually become a comprehensive narcolepsy handbook for sufferers - written by a sufferer, with the help of various professional expertise as appropriate. Actually, I'm so much more than excited! I've started writing it in the hope that it will appeal to people with the condition, those who support them and academics alike. Although not an exhaustive list, here's a heads up on some of the chapter themes...

• Medical aspects - causes, symptoms, misdiagnosis, treatment options, importance of appropriate medical support, all with contributions from a qualified and reputable sleep specialist

• Sociological / life effects - family life, friendships, relationships, employment difficulties, financial consequences, public awareness, incorrect perceptions within wider society and its implication upon patient disclosing behaviour to name just a few.

• Possible psychological effects and coping strategies - with advisory contributions from a psychologist/psychiatrist

• Issues specific to children - development, education considerations, family, social, personal (self-esteem, confidence etc)

• Issues specific to teenagers / young adults - education, barriers to further education and employment, financial implications, affects upon social aspects and relationship considerations to name just a few!

• Issues specific to women - pregnancy, birth, parenting etc

• Issues specific to men  - wholly dependant upon research findings and willing contributors!

• Plus a dedicated section to those who support people with the condition, addressing the implications to their lives and coping strategies that could be of benefit.

The intention is to continue writing it with a scientific research element in mind and include my own detailed research. I also hope to feature a number of real life stories, hints and tips from sufferers throughout.....

BUT I NEED YOUR HELP!!!! WOULD YOU LIKE TO.....

- Contribute to the chapters identified above, whether that be in the form of real life story accounts or short 'handy hints' that people have developed to help them manage and make life that little bit easier. Those little adjustments to your life that you perhaps don't give a second thought to may really help someone else. Contributions can be anonymous if preferred.

- Participate within the research element. The more people involved, the better and both those with the condition and those supporting them would be welcome to share their experiences. The research would meet very strict, professional criteria and be completely confidential (I'm trying to secure an appropriate academic mentor to oversee the research to ensure this at the moment). Information collected would only be published as part of overall statistics, with specific experiences being quoted with clear prior, permission. Anyone WORLDWIDE can be involved and information would be collected initially by an email, questionnaire, followed by detailed interviews taking place in person, over the phone or video conferencing. As a PWN myself, I fully appreciate the sensitivity of the subjects that would be discussed and can't stress enough how respectful collection of information would be a priority for me.

I would prefer that people contact me via email at crazynarcolepsy@gmail.com, just so that I can keep everything easily organised! I have also set up a Facebook page that is specifically for this project, where I will post regular updates and hopefully identify those who are interested in participating /contributing :)


Should the link above not work, here is the address to my new page to support this new project https://www.facebook.com/pages/Claire-Metters/619064254805511

EDIT
I'm really pleased to say that another writer will be contributing to this and that we are in the early days of establishing our roles :)