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Living with Primary Biliary Cholangitis

This is Carol’s story:

I had a routine health check last August 2017. The check up included a fasting blood test which was done just after my 60th birthday.

Following several more blood tests I was booked in to have an Ultrasound, a Fibroscan and a MRI Scan, I was diagnosed as having Gallstones, Non Alcoholic Fatty Liver Disease (NAFLD for short), Liver Fibrosis and Primary Biliary Cholangitis previously called Cirrhosis (PBC).

To be told all of this and that PBC is incurable is difficult to take in. I have since read up everything I could on PBC. After searching for answers I found a wonderful organisation based in Edinburgh called The PBC Foundation. They sent me so much information and are always at the end of a phone. PBC is a slow, chronic liver disease which causes progressive destruction of the small bile ducts within the liver. It is an auto-immune disease whereby the body’s immune system malfunctions and turns on itself where the body attacks the cells lining and the bile ducts within the liver, attacking them as foreign bodies. PBC predominantly affects females at a ratio of 9-1 women to men.

It has been shown that as many as 1 woman in a thousand over the age of forty may have PBC although in many cases like me the illness may be silent (asymptomatic). I am now on medication called Ursodeoxycholic Acid, Urso for short, it has been prescribed for me to help lower my liver count. I will not know whether it is helping until I have been taking the medication for a year.

After all this bad news this is how I have turned a negative mindset into a positive one with help from Active Nation Boutique Fitness.


I was told to have my gallbladder removed in July 2018. Within 5 weeks I had signed up to a leisure centre courtesy of a GP letter referral to get myself fitter and more active both physically and mentally. I have amazing friends at Active Nation Boutique Fitness. They have helped me so much, we are there for each other, to motivate and to have someone to talk to.

I have amazing family support. My daughter has been incredible, she has helped me along this journey, guiding me with her Nutritional knowledge. My daughter and I are going to Birmingham soon, meeting some of the team from the PBC foundation and some professors from around the world.

Without the help of the club in Lymington, I would be in a much darker place than I am in right now. I get down days of course, but I am determined to fight this. My eating habits have changed considerably. Much healthier foods, I look at every label. I never eat processed foods any more.

Everyone I see now says how well I look. I tell them I am a fraud in disguise. You can make changes to your life for the better but if I hadn’t been told I had a incurable liver disease who knows where I would be, the same me I suppose, but not anymore.

Thanks to everyone’s help and support, and I mean everyone, I am now in a much better place. And a big pat on the back for me.

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