A newlywed whose constant itching felt like “ants you can’t get rid of” was diagnosed with a rare incurable liver disease. Flo Moffat-Charles, 29, began to feel sick two months after she married her husband, Josh, 29.
She started suffering from extreme fatigue, nausea and chronic itchiness on her hands and feet. While Flo underwent months of tests, the couple decided to cancel their “dream” honeymoon to South America – losing their £1,500 deposit.
Flo was eventually diagnosed with primary sclerosing cholangitis 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 itchiness.
Flo, a fundraiser, from Kendal, Cumbria, said: “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. At the time it was all-consuming. It was what we thought about every day.”
“My feet, my hands and my legs felt like they were on fire.”
Josh, a partnerships manager in the events industry, said: “As the partner of someone with a progressive chronic condition, you can feel a little helpless. The itching is almost like ants on your skin that you can’t get rid of. It’s quite an intense feeling that you can’t really relieve.”
The newlyweds, who tied the knot in September 2023, were looking forward to their honeymoon trip when Flo started to have symptoms.
Josh said: “We’d booked a one-way ticket and had planned to travel for at least four months around Peru, Argentina, Chile and Bolivia. We’d saved up the money over the last few years and both left our jobs in anticipation of the trip.”
Flo started to get itching in her hands and feet, nausea, constant fatigue and jaundice in November 2023.
Josh said: “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 her horrid symptoms.”
Flo had 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. She is currently taking each day as it comes.
She said: “I still struggle a lot with some of the symptoms. 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.”
She is back in full-time work despite suffering from medication-induced insomnia.The couple are trying to “seize the day” following the life-changing diagnosis. They have bumped their dream of getting a dog “right up our priority list”.
She said: “Things do still feel quite fresh.”
“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.”
Josh is also planning on running the London Marathon in April to raise awareness of the little-known disease.
Josh said: “It will probably just become part of our life and that’s something that we’re going to have to continue to deal with. Ultimately we want to be able to live and live well.”
Josh is running to raise money for the charity PSC Support one of the few organisations providing patient support for the disease.
He said: “It’s taught us to enjoy every moment and get out there and have as much fun as possible.”
“You don’t know when something like this is going to be around the corner. We have to hold out hope.”
Flo said: “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. 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.”
To donate to Josh’s JustGiving campaign visit: www.justgiving.com/page/josh-moffat-charles-londonmarathon
