Last Saturday I was volunteering at a PSC Support meeting at the Queen Elizabeth Hospital in Birmingham.  These face to face meetings allow people affected by PSC who often feel isolated and their condition and symptoms misunderstood to meet with others in the same situation. Knowing that they’re not alone can have the most remarkable positive effect on PSC suffers and their families. I remember when Martine went to her first meeting and she came back with a far more positive outlook after talking with someone who had gone through a liver transplant after having PSC and was doing really well.

The other part of these meetings is bringing together medical experts and PSC researchers to share their knowledge and deliver updates on their work. This time we had presentations around Liver transplantation in PSC and new scanning techniques which could dramatically improve Liver diagnostics and reduce the time of clinical trials. A lively Q&A session followed – and this was very welcome because you typically don’t get that kind of time and access to a consultant when attending your regular clinic appointment.

We also received an update on medical research on PSC and this was very exciting. There’s genetic profiling research due to be published later this year which should identify many of the genes associated with PSC – in fact it may even suggest that PSC is a cluster of similar but slightly genetically different conditions.  That kind of insight can really help clinical research into possible therapies. Another enticing research strand in the UK is looking at the autoimmune nature of PSC and seeing if existing drugs can be targeted to halt and even potentially reverse the effects of PSC. Of course all that takes time and money and that’s one reason that I’m fundraising for PSC Support – to enable them to make the research grant contributions that help medical science move closer to understanding the mechanism of PSC and to find effective therapies.

Events like last week both inspire me when I hear the various “PSC’ers” stories and give me hope when I see the research direction and energy.

PSC is unpredictable. Every sufferer experiences different symptoms which progress at different rates, some rapidly, some more slowly. In progressed cases Liver transplantation can often be their last chance.

Here in the UK there was a recent media campaign “from the heart”  which promoted organ donation.  As part of that campaign there were two videos about PSC suffers both of whose families happen to have also been supported by my chosen charity PSC Support. Take a moment to hear their stories – they’re both an inspiration and motivation to me.

Craig – a young family man who recently had a liver transplant.

Jade – a young women whose PSC has progressed to the point where she needs a new liver. Jade’s father was an organ donor after his unexpected death so her family has a unique perspective of both sides the subject.

Would you accept a donated organ if your life depend on it, or if a family member’s did? I suspect the vast majority of us would say yes –  I would! Signing up to be an organ donor doesn’t mean you any more likely to die. In fact you’re more likely to need a donor organ than to donate one.

When Martine was diagnosed with PSC and I began to educate myself about the condition I made sure I signed up to be an organ donor in the event of my death.  I’ve met many people who have gone through a liver transplant and the wonderful gift it is for them and their loved ones. Please consider registering to be an organ donor too and make your wishes known to your family.

This month Sally Davies, the UK’s Chief Medical Office published her first annual report. In that report she highlighted the increase of Liver Disease in the UK and how this is linked to life style choices and behaviors such as alcohol, obesity and infection.  There was a lot of national media coverage generated.

Whilst people undoubtedly need to be educated  on the topic so they can make informed decisions Ms. Davies’ comments fail to include that some liver disease isn’t self-imposed – it just happens. My concern is that by framing liver disease in the media as “self-inflicted” that the public then reduces is sympathy for the cause both in terms of charitable support and of registering to be organ donators in the event of their death.

There’s a massive shortfall of livers for transplant in this country and many people die whilst on the waiting list. PSC, the disease my wife suffers with isn’t caught or incurred due to lifestyle choice – it just happens. They don’t know why and there’s little to no funding for research. There are plenty of other “non-lifestyle” liver diseases out there too.

There’s a stigma to Liver disease – I regularly hear people with PSC act as if they have to justify their illness “it’s not because of alcohol or drugs” etc.  I think that our Chief Medical Officer has just helped reinforce that stigma and ultimately risked damaging support for Liver disease sufferers and charities in the UK. Next time Sally please thinks about the broader context and communicate more effectively!

Apart from helping PSC Support, my chosen charity there’s something else you can do though – register to be an organ donor and discuss it with your next of kin so they don’t have the burden of a tough decision at a difficult time. Most of us would want an organ transplant if we needed it yet so very few us register to donate…