Nottingham women waited years for rare liver disease diagnosis

“I would plunge my feet into a bowl of ice cold water and that would sort of change the mindset, dealing with the itch,” she said.

“Or my arms – I would sometimes scratch them so much, particularly during the night, I would draw blood.”

But with the condition being “invisible” and not knowing anyone else with it, Ms Rich said she kept the diagnosis mostly to herself.

“How do you say to somebody I’m walking through treacle, I’m really fatigued, my bones hurt – when I looked fine?” she said.

After years of feeling “quite isolated”, Ms Rich approached a charity that supports people with the condition, the PBC Foundation, and subsequently met a fellow patient who had set up a peer support group in Nottingham.

Wendy Wheat, 53, from Arnold, established the support group after she was diagnosed in 2012.

But it was a long five years of misdiagnoses, while trying to manage what she said was “debilitating” fatigue and a persistent itch on the arches of her feet, before Ms Wheat got answers.