Michelle Williams, 47, from Brighton has primary biliary cholangitis (PBC), a rare autoimmune liver disease in which the immune system attacks and gradually destroys the liver’s bile ducts. If left untreated, bile and toxins may build up, leading to scarring of the liver and eventual liver failure. The condition is aggressive and non-curable.
Michelle first started experiencing symptoms in her late twenties. She said: “I was doing really well at work and travelling all over the UK for my job. I was really enjoying it.
“I started to notice that when the weekends came by, I couldn’t do anything because I was really exhausted. If I had plans made, I would often have to cancel.”
Over three years, Michelle kept returning to her GP but remained undiagnosed. She said: “I was really exhausted and the only energy I could find was for my job, so I was missing out personally. One day I went to the GP and broke down in tears and she said we’ve got to get to the bottom of this.”
Michelle was referred to an endocrinologist who, after running tests, diagnosed her with PBC. She said: “I was diagnosed with a condition I’d never heard about in my early thirties. As everyone does, I looked it up online and Google said my life expectancy was five years – I was completely devastated. I kept thinking ‘why me? What have I done?’.
Michelle stumbled across the PBC Foundation, a charity which supports people with the condition, and they helped to explain it. “Suddenly it wasn’t so scary,” she said.
Michelle now volunteers for the charity and says it is a “real struggle” to diagnose the condition. Nine out of ten people with condition are women.
She said: “With women of a certain age, your symptoms become quite generalised and it can be attributed to being menstrual or the menopause.
“It’s stolen quite a few years from me – not knowing I had this underlying condition all along.”
Unfortunately, Michelle is a non-responder to the standard treatment for the condition. Around five years ago, the secondary symptom kicked in: itching.
She said: “That’s when it really got on top of me, the itching was so profound, so all consuming. It’s not topical itching (on the skin), it’s inside. It feels like little spiders moving around inside your body and you’re trying to catch them, but they keep moving around.
“Your natural release is to itch and that causes scratches which leads to bleedings, scabs and infection. That’s when I thought, ‘oh my god what is this condition doing to me’.
At this stage, Michelle decided to take some time out of her job as an audit manager. She said: “That was really hard for me, in my forties to give up what had been my life. I had done that job for 18 years – that was my identity, that was what I was so proud of.”
As news comes that Iqirvo (elafibranor) has been approved for NHS use for the condition, Michelle says she welcomes any new treatment and hopes to raise awareness of the disease.
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