I write this blog to share my experiences on living with a rare medical condition. To connect with anyone who can associate with the struggles and to inspire everyone to make choices in their lives that make them happier, healthier and more fulfilled (the way I choose to live my life).
One of the many difficulties of living with a rare condition is that comparatively little effort is put into research regarding measures that may help patients, so in sharing things I find helpful I hope to inspire others to investigate things they think might work for them in their lives or conditions.
As a patient, I do not aim to give medical advice or direct anyone to change their treatment based on my experiences – what works for me may be a disaster for you. You should always seek advice of professionals who understand your situation when making your decisions. I do not intend this site to replace informed medical or nutritional advice.
I do advocate that everyone critically analyses all options presented to them to their own satisfaction – you are the one who has to live with the consequences of your decisions, make sure you’re happy with them.
