Welcome to the Action on Gilbert’s Syndrome website. We’re here to bring you the latest up to date info on Gilbert’s Syndrome in an easy to access site. If you want updates on our progress just go sign up on the right! =>
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Action on Gilbert’s Syndrome has been in existence since 2003. Since then I’ve collated information from other websites, published medical research, and anecdotal information from people who get in touch to tell their story. One of the biggest gaps in knowledge seems to be directly due to the lack of evidence from people with Gilbert’s Syndrome themselves. I hope that more studies of groups of people with this genetic condition will be done in the future. I’ll keep you posted!
One in 20 people may have Gilbert’s Syndrome (or possibly more), but only one in three of those will be aware of it, and less than one in three will have any symptoms at all. Most people who have it are men. Sometimes called Gilbert’s Disease, it is not in fact a disease.
Most Doctors use standard reference information that tells them to tell you that Gilbert’s Syndrome is harmless. However, information from scientific studies illustrates that you may experience a number of symptoms, including the most common one of jaundice, and that you need to be aware of certain chemicals, including prescription medication, that you are less able to cope with.
This website offers those with Gilbert’s Syndrome, and their family and friends, as well as the medical profession, further information from published scientific research and shared information from hundreds and thousands of individuals who have Gilbert’s Syndrome.
I hope it helps us all live better with Gilbert’s Syndrome.