Story
Thank you for taking the time to visit my JustGiving page and for (hopefully) making a donation to this hugely worthwhile cause. As many of you will know I am not the most athletic (some may say largely inflexible) of people therefore running a half marathon is going to be a major challenge and cause me an awful lot of pain! All for good reason though...
PSC is not something that I expect most of you will have heard of and this is something I would like to start to change. PSC stands for Primary Sclerosing Cholangitis; it is a rare autoimmune liver disease which affects the bile ducts. The condition sadly has no known cure. It is a condition which lies close to mine, my wife and our family's hearts after my mother in law was diagnosed 2 years ago and continues to battle with symptoms on a daily basis whilst carrying the burden of not knowing what the future holds. My aim by taking part in the Great North Run is to raise as much money as possible to support further research into understanding the cause of PSC and hopefully providing a cure so that others, including young children, don't have to suffer with its effects in the future.
Finding a cure is going to be a major feat given the complexity of the condition and its link with other major illnesses. What we do know is that during PSC, the bile ducts (passages that carry bile from the liver to the intestines) become narrowed from inflammation and fibrosis. Over time, the scar tissue builds up and can block parts of the bile ducts completely. The blockages can occur in any part of the liver, interrupting the flow of bile and causing a variety of symptoms; ultimately putting an individual at risk of liver failure.
Some of the symptoms, including tiredness, aching, pruritus (itching), pain in the upper right side of the abdomen, jaundice, chills and fevers can be managed via daily medication and frequent testing. However, it seems that just as one thing is managed; another materialises. Liver transplants are also commonplace for those contracting PSC but these come with their own risks and inevitably don't always work out. All in all, the risk of sudden episodes of severe illness are high and this was where it all started for us in 2014. Many people with PSC, like Sue, are asymptomatic up until the point of diagnosis; that is, don’t even show any outward symptoms to indicate they are living with a chronic illness. However to this day, for those of you who know Sue will understand that she carries on regardless and tries to hide all too well the impact of living with a chronic condition. What we can't forget is that the progression of the disease is highly variable: the speed of progression of PSC, severity and the number of symptoms cannot be predicted meaning that we live in a situation of significant uncertainty.
Current evidence suggests that PSC arises from a combination of genes, the immune system and some sort of trigger. A common misconception would relate liver disease to alcohol consumption and this is far from the case. People with a particular genetic make-up may be susceptible to particular toxic or infectious agents, which triggers their immune system to effectively ‘attack’ the bile ducts. This means that PSC is a disease that could continue to cause us a significant level of distress as a family. The British PSC Consortium is currently looking into genetic factors that might make people more susceptible to PSC. PSC Support is supporting this Genetic study, which in my view is hugely valuable and needs all the funding it can get.
PSC Support doesn't just find studies but provides crucial support to those at different stages of the PSC journey. It provides a source of information to patients away from the scare-mongering facts on the Internet. Any donation big or small will enable this to continue and help to raise awareness of a little known but highly distressing disease which has life changing impacts. Please donate whatever you can as every penny really does count.
Thanks
Dave
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