I was dragged kicking and screaming into the world of parent advocacy in 2009, after my daughter became ill with anorexia nervosa and I realised I had fallen down a rabbit hole of blame, misinformation, outdated ideas and practices and a systemic lack of knowledge and care throughout not only our mental health system in the NHS, but throughout the world.
I stumbled upon the Around the Dinner Table forum and F.E.A.S.T., plucked up my courage and posted my first post. The warmth and help I received from my fellow contributors was the first time I felt any sort of hope for our family. The relief was palpable and, with a lot of time and support, my daughter is now recovered. And I am darn proud of not only her and our family, but also that I can pass on my knowledge and experience to other families in trouble and watch their children grow and recover.
It is not all happy endings though. Treatment for eating disorder patients is woeful and inadequate and, in some cases, dangerous.
The Helix project is not only about collecting and analysing samples. It is a way for me to bring eating disorders into the consciousness of my many friends, who exist in a world untouched by this mental health problem. I hope that by connecting my two worlds, people will become educated about what an eating disorder is - nobody's fault and nobody's choice - and stop perceiving eating disorder patients as wilful, vain or attention seeking.
I hope that the Helix project will, in some small way, give future generations the opportunity to know the "markers" and to be prepared and take the necessary steps to guard against an eating disorder. I also hope it will show the way for better treatment options so that families don't have to go through the hell that we did.
Meet Charlotte Bevan