Woman's constant itching turned out to be a sign of rare liver disease
A woman has explained how her constant itching turned out to be a sign of a rare, incurable liver disease.
Flo Moffat-Charles, 29, a fundraiser, from Kendal, Cumbria, had only been married to her husband, Josh, 29, for two months when she started feeling unwell.
As well as experiencing extreme fatigue and nausea, the newlywed also describes suffering from chronic itchiness on her hands and feet which she says felt like "ants you can't get rid of".
Flo had to undergo months of tests, and as a result the couple decided to cancel their "dream" honeymoon to South America.
Early this year she was eventually diagnosed with primary sclerosing cholangitis (PSC) – a rare liver disease, which has no cure.
She was also diagnosed with autoimmune hepatitis – an inflammation of the liver that occurs when the immune system causes damage to healthy cells.
Flo now takes 13 medications a day to manage her symptoms and has to place ice packs on her feet to help ease the constant itchiness.
Having tied the knot in September 2023, the newlyweds were looking forward to their honeymoon trip when Flo started to experience symptoms including feeling sick, extreme tiredness and jaundice, but it was the unbearable itching on her hands and feet she really struggled with.
"She was sleeping with ice-packs on her feet. Taking cold baths in the middle of the night in an attempt to ease some of the symptoms," her husband Josh explains.
Flo underwent several blood tests, an MRI scan and ultrasound before she was diagnosed in January 2024 following a biopsy.
Her condition is progressive and currently has no cure, so she says she is currently taking each day as it comes.
"For a period of time it was really scary to think about anything long-term because it suddenly felt like so many decisions were out of our hands," she explains.
She also describes how she found living with the symptoms of her condition as "all-consuming".
"It was what we thought about every day," she explains.
"My feet, my hands and my legs felt like they were on fire.
"I still struggle a lot with some of the symptoms," she continues.
"The itching comes and goes but it’s nowhere near what it was before. It’s now kind of this acceptable level of basic itchiness."
The couple say they are now trying to embrace every moment following Flo's life-changing diagnosis and have bumped their dream of getting a dog "right up our priority list".
"Things do still feel quite fresh," she explains. "We're still in the process of doctors doing blood tests to make sure that they're happy with how my body's responding to medication.
"But once I feel like we’re in a routine with that we’re going to be doing as much as we possibly can and utilising every day of annual leave.
“It's just like a reminder every day that you've got to make the most of things."
"When you get married and take the vows 'in sickness and in health', you don’t expect to have that put to the test quite so quickly," Flo adds.
"Receiving a diagnosis of a life-long illness is not something we anticipated for the start of our marriage.
"It’s been a difficult few months, but Josh has made me smile and laugh through it all.
"I know it’s been so tough for him to watch me going through this and to feel so helpless.
"He stayed up every single night that I couldn't sleep due to the itching – fetching me cold towels to lay over my body in an attempt to soothe it."
Despite experiencing medication-induced insomnia Flo has been able to return to work full-time and Josh is now planning to run the London Marathon in April, for the charity PSC Support to raise awareness of the little-known disease.
"It’s taught us to enjoy every moment and get out there and have as much fun as possible," Josh explains.
"You don't know when something like this is going to be around the corner.
"We have to hold out hope."
What is primary sclerosing cholangitis?
According to the British Liver Trust primary sclerosing cholangitis is an uncommon chronic liver disease in which the bile ducts inside and outside the liver progressively decrease in size due to inflammation and scarring (fibrosis).
The disease may occur alone, but frequently is associated with inflammatory diseases of the colon, especially chronic ulcerative colitis.
While the cause of PSC remains unknown, evidence suggests that the disease may be triggered by an unknown bacteria or virus in people who are genetically programmed to get the disease.
The disease can occur at any age and affects both men and women, although two male patients are affected for every female patient.
Though some people with PSC do not have any symptoms, common early symptoms include:
tiredness
some abdominal discomfort in the right upper abdomen.
Late symptoms of PSC include:
itching
jaundice – yellowing of the skin and whites of the eyes
episodes of fever, shaking and chills can be distressing but are uncommon.
At the moment there is no known cure or specific treatment for PSC, but the British Liver Trust says symptoms such as itching can be treated with agents such as cholestyramine, rifampicin or naltrexone.
Additional reporting SWNS.
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