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Clare was diagnosed with PSC at the age of 18 and went on to receive a liver transplant a few years later


Things moved along relatively steadily

I was diagnosed with PSC in 2006 at the age of 18. Like many people at the point of diagnosis, I had never heard of the disease. So the first thing I did (which the doctors will tell you not to do and they are right!) was Google the disease. My mum and I read some pretty scary things, the majority of which are just not true but we then met with a specialist who put our minds at ease somewhat.

Things moved along relatively steadily until just over six years later when my health started to seriously deteriorate. The simplest task left me utterly exhausted, I had constant severe itching which would not go away no matter what I tried and the jaundice meant I looked like a character from The Simpsons. My bloods were also painting the picture of a critically ill young woman. I became so ill that the decision was made to put me on the transplant list in order to save my life.

A transplant became my beacon of hope

We were told from the beginning that transplantation was something that could happen and as my health started to deteriorate transplantation became more and more prevalent. Whilst in the beginning the thought of having to undergo a liver transplant terrified me, as time went on and my life was slipping away from me it became my beacon of hope. The hope that I might one day feel better, the hope that I might get to see my nephew grow up or spend more time with my family and friends, or just the hope that I might have a future.

After undergoing the transplant assessment I was placed on the transplant waiting list. From the day you are listed your phone could ring at any time and so it can be a very anxious time wondering if that call will come in time. I was extremely lucky and just 10 days after I was listed I received that life changing call and life saving gift.


It's important to register your donation decision

My donor and his family are forever in my thoughts. I hope that they take some comfort in the fact that their son/brother/husband/father's choice to donate their organs meant that he not only saved my life but is likely to have saved others too. I wouldn't be here today without his family knowing and respecting his decision and for that I quite literally owe them my life.

This journey has not been an easy one both mentally and physically and it’s far from over having been diagnosed with recurrent PSC but I have tackled this disease once before so I can definitely do it again!

Regardless of your organ donation decision, it’s so important to register it and tell your loved ones so that they can honour that decision. You could save someone like me!

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Clare tells us why organ donation is so important.

England, Wales and Scotland have all moved to an opt-out organ donation system in recent years. This means adults in these UK countries will be considered a potential organ donor unless they opt-out. This is to give more people the chance of receiving life saving transplants when they need them.

More real life experiences:

Just diagnosed?

10 things you need to know about PSC

What we do

Improving the lives of people affected by PSC

Liver transplants

Everything you need to know about having a liver transplant