Nick's Journey: From Childhood Diagnosis to Adult Advocacy
We recently sat down with Nick, who was diagnosed with PSC in 2013 at just 12 years old.
Now, eleven years later, he shares his journey as a young person living with a rare disease, his passion for raising awareness about PSC, and his hopes for better opportunities and support in the future.

What led to your diagnosis?
Looking back, it all feels like a blur. My diagnosis came almost by chance, as my symptoms were so subtle at the time. I was being shuffled from doctor to doctor, and hospital to hospital, with no one able to pinpoint the problem.
The turning point was my constant reluctance to go to school, always complaining of feeling sick and having no appetite. It wasn’t until I had an appointment with a liver specialist that we stumbled upon the cause. They noticed we hadn’t done a Liver Function test yet, and when we did, the results came back elevated. That’s what finally led to the correct diagnosis.
How did you feel when you received the diagnosis?
To be honest, it didn’t affect me as much as you might expect. Being so young, my main concern was when I could go home, especially since my symptoms were so minimal. I didn’t feel any different from anyone else—I was still playing outside and going about my days as if nothing was wrong.
It was much harder on my parents. Learning that your child has a chronic liver disease is incredibly difficult to process. But with the support of charities like PSC Support and the amazing teams at King’s Cross Hospital and Addenbrooke’s, we all felt less alone and knew this wasn’t the end of the story.
How does PSC affect your day-to-day life?
To put it simply, it doesn’t affect me the way you might think. It’s not that I don’t have symptoms, but I choose not to let them control me. For me, mindset is crucial in dealing with challenges like this. I’ve experienced both extremes: I’ve been at rock bottom, feeling hopeless, and I’ve also been where I am now—living life as if nothing is wrong. No one likes feeling different; we all want to fit in. I often ask myself, “Why me?” But I believe everything in life happens for a reason, and there are lessons to be learned from it all. PSC has only made me stronger, both mentally and physically.
Don’t get me wrong—I still have bad days where PSC really gets to me. My symptoms mostly involve itching, low energy levels, and persistent jaundice in my eyes and skin. You might think the itching and fatigue would be the hardest to deal with, but for me, it’s the jaundice. It affects my confidence, especially when meeting new people. Comments like "You look ill" or "You look yellow" can be tough to hear. No one wants to be told they look different, and in a corporate environment where meeting new people is a regular part of the job, it can be even more challenging. My way of coping is simply reminding myself that this is who I am, and it’s something I can’t control.
In 2022, I spent 10 days in Addenbrooke’s with bacterial cholangitis. That was my lowest point, where the question “Why me?” lingered in my mind constantly. When you hit rock bottom, the only way to go is up. I had two options: I could lie there feeling sorry for myself, or I could get up and do something about it. I chose to study and read about mindset, realising this was the area I needed to work on the most. I’ve almost become defiant in my belief that my condition won’t stop me from achieving anything I want in life. A huge factor in this is surrounding myself with the right people—those I can always rely on, whether they’re family or friends.
Is there something you've achieved despite PSC? Have you missed out on something?
Absolutely! There are positives in every situation, and PSC has taught me many valuable lessons. Without it, I don’t think I would have the mindset and outlook on life that I do now. It’s made me resilient and able to handle whatever life throws my way.
For me, it’s the small daily victories that matter the most—being grateful for another day, having a good job, and staying fit. When I talk to my doctors about my lifestyle after discussing my symptoms, it really highlights how much I accomplish each day.
One of my biggest achievements is my weight gain. In 2022, after leaving the hospital, I weighed just 46 kg. I decided to commit to the gym, and now I weigh around 58 kg. Working out and running are now part of my daily routine, and I can’t imagine life without them. Within the next few years, I hope to complete a marathon and prove that nothing should hold anyone back from achieving their goals.
As for "missing out," when I was 18, I used to feel left out because I couldn’t join in on the drinking. Now, I see it as a blessing. Being able to have a good time without alcohol is something I’ve come to appreciate and wouldn’t trade for anything.
Why are you choosing to fundraise for PSC Support?
I’ve experienced the difficulties of PSC up close. As someone living with this condition, I am dedicated to raising awareness and working toward overcoming it—not just for myself, but for everyone who is dealing with this struggle. By spreading awareness and taking an active role in this fight, I hope to create better opportunities and support for those who will encounter PSC in the future. It’s time to transform my experience into something positive and make a significant difference.
Thank you Nick for sharing your story.