"For me it started about 6 years ago, when a blood test resulted in a diagnosis of ‘Gilbert’s Syndrome’.  It was explained it wouldn’t really affect me much but had symptoms of nausea, fatigue and jaundice. That really clicked with what I’d been experiencing, as well as the bowel problems and stomach pains which was why I’d had the blood test in the first place and was put down to a worsening of my Irritable Bowel Syndrome.

Well, it’s taken years to get my head around the fact that Gilbert’s Syndrome has caused a lot of my physical symptoms and that I’ve had to change my life to cope.  The first place I went to was the web, and I discovered Gilbert’s Web which over the years helped me face how many of my symptoms were down to GS.

I am probably healthier now than I’ve ever been. I exercise to keep my energy up, eat organic fruit and veg, and a low fat diet high in good sources of protein.  I barely touch alcohol and keep anything that stresses my liver to a minimum.  I’ve discovered organic paints and so the environment also benefits!  My work and social life revolve around my energy levels being higher early in the day, and the need for a good night’s sleep.

It’s been a long journey, and I have received the most help from the experiences of others, and the little medical research available.  So I resolved to make a difference and share what I have learnt, and change the way people with GS are neglected by the medical community. I’ve set up this organisation to share learnings, talk to Dr’s and get them on side to at least provide people with a contact body to get more help and support, and to get research undertaken to solve some of the mysteries we with GS ponder.  Is it really hereditary?  What percentage really have it and how many have bad symptoms and why do some have very few symptoms?  Why am I so thirsty? Why do so many of us have Irritable Bowel Syndrome?  The list goes on, but solutions start here.

I am so grateful for the stories of other people.  It’s helped me live with less ‘guilt’ at feeling unwell, and taught me ways to live more free of the symptoms.

So, please, send us your experiences and give someone else hope.