Sophie’s Story

When most people hear ‘liver disease’ more often than not they think of alcohol and older men, but here I am, a 32 year old woman who’s been living with a liver disease since I was 18.  I was diagnosed with Primary Sclerosing Cholangitis (PSC) as a teenager. They don’t know yet what causes it. I just have it because of the type of genes I was born with - just one of those things. It was quite easy to diagnose for me, because despite at the time having no other symptoms than occasional itchy feet and legs, I had ulcerative colitis (which is very common for people with PSC to have as well) and my dad also had PSC.

For the past 10 years, PSC has taken a back seat to health problems I’ve had with ulcerative colitis and I’m much luckier than most as I’ve never experienced serious symptoms. But, it’s always there in the background and in the last year I’ve had to increasingly watch what I eat as my liver has become more intolerant to fatty food, which leaves me incredibly itchy! Occasionally it can also leave me feeling nauseous, achy and tired. I have to be more careful than most people my age about how much rest and sleep I get and I don’t drink alcohol.

Sadly my dad passed away when I was 24 and I’ve seen first-hand how poorly people become when their liver starts to fail.  When I hear people my age joke about how much they’ve drunk the night before and what state their liver must be in, I know they wouldn’t joke about it if they’ve ever spent time on a liver ward or experience what it feels like when your liver doesn’t work properly.  I’d encourage everyone not to take their liver for granted and to sign up to be an organ donor as transplantation is often the only cure for liver disease and there are always more people waiting on the transplant list than there are livers.

I try to be very positive about the future. I have my liver checked every six months at Guys and St Thomas’s hospital, I hold down a full time job and despite the odd day when I don’t feel so great, generally get on with enjoying life.  I want to help raise awareness of liver disease of all types and hopefully see more research in to liver diseases like PSC and liver cancer so that we can understand them better and find some new effective treatments. I also want to let people know how important their livers are. You only have one, so learn to love it!

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