Diane walks to beat Primary Biliary Cholangitis (PBC)

Diane Reeves is a teacher in Solihull. She has Primary Biliary Cholangitis (PBC). It’s a rare, chronic and progressive autoimmune disease where the body attacks the bile ducts, causing damage to the liver. This is her story.

I was diagnosed with PBC in 2015, not that long ago. It was a long journey to get there and for years I had health problems that I just put down to other things. A common symptom of PBC is extreme tiredness and brain fog, so extreme that you can’t lift your body out of bed some days, like having muscles with no power. I had also struggled with depression, so I just put the tiredness down to that. Another common symptom is very itchy skin. During one of my pregnancies I had a rash from the neck down – I just put it down to eczema or something.

A while after my third pregnancy, the doctor sent me for a blood test and when it came back, I was told my liver enzymes were off the scale. But when I went for an ultrasound, there were gallstones, so we just put the liver issues down to that.

It took years to get a proper diagnosis, but it didn’t really make things better for me. When I got the diagnosis, mentally I crumbled. I had been doing a lot of running to help with depression and had built myself up to running four times a week and completing several half marathons. When I was diagnosed I thought I couldn’t run anymore and couldn’t really understand what I had. Now I’m glad I know, but I wasn’t then.

I was told that if I responded to medication, I would have normal life expectancy, if not, then it would be shorter. I stopped listening after that.

I started medication and was told I’d have to be on it for a year to see if it worked, but I didn’t respond. Then I was put on a trial for two other drugs, but still didn’t respond. Now I’m on a third one. Still not responding, which is sadly quite unusual.

Having to wait a year to see if you respond to a medication is not good – now you can do things much more quickly. It would be wonderful to find something that could help with the fatigue, and the itching. I do think exercise helps, but it’s annoying that I can’t do as much as I used to.

Mentally I feel good, I’m not running at the moment, but I am walking a lot. I do five miles with a friend on Saturday and Sunday and I also walk to work when I can. I’ve been a teacher since 1993, and at my college since 1997, teaching world English to adults.

I love my job and it’s great that work is understanding when I have to go for medical appointments and things.

I’m also a volunteer with the PBC Foundation – they were amazing right from the start. They run meetings every couple of months and even through lockdown, they started so many groups. I help run meetings and also fundraise and do charity walks for them. They should be the first port of call for anyone diagnosed with PBC.

Find out more about the work of the PBC Foundation here or follow them on Twitter.  

  • Rare diseases

Last modified: 20 September 2023

Last reviewed: 20 September 2023