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.
- Rare diseases
Last modified: 20 September 2023
Last reviewed: 20 September 2023