Collette Thain, Founder of the PBC Foundation writes:
‘In the eighteen years that I have been running the PBC Foundation, the consistent theme from the people who contact me for help has been the lack of an early diagnosis. Primary Biliary Cirrhosis is a serious auto immune liver disorder which, if left unchecked, can result in grave consequences. Unfortunately, taken individually, the main symptoms of the condition – fatigue and exhaustion, itchy skin, dry eye, aching joints – can all be easily dismissed as something minor.
The result is that there has been an estimated 8,000 women (nine women are affected to one man) that are going undiagnosed right here in the UK today. Frustratingly, if they were diagnosed, with a simple liver function test, –quality of life can improve with the help of a drug called ursodeoxycholic acid.
Some of the stories I hear are mind boggling. It is not unusual for a women to go undiagnosed for months or even a few years but I know of one woman who went undiagnosed for twenty years. She was diagnosed in her mid thirties but had been going to see her GP since her mid teens. I have spoken to women who were told that they most definitely had scabies – even though scabies is highly contagious and other people around them usually have it too. If you are a middle aged women chronic and overwhelming tiredness, can easily be dismissed as menopause, or failing that, depression. Aching joints and muscles too are explained away as simply symptoms of good old fashioned ageing.
Even if your GP decides to take blood tests they don’t always run liver function tests. So you may get a set of results back that look perfectly normal, when in fact you may be seriously ill.
If I could offer one piece of advice it would be that, if you have one or more of the above symptoms, ask your GP to carry out a liver function test called an AMA (Antimitochondrial Antibodies)test. It is very cheap, easy to do and it could save you a great deal of misery.
About the author
The PBC Foundation (UK) Ltd. is a charity offering support and information to PBC sufferers, their families and friends. The PBC Foundation provides support for people suffering with Primary Billiary Cirrhosis, their families and friends. The PBC Foundation issues a quarterly newsletter and can put you in touch with others that have PBC.