Martine, my wife suffers from Primary Sclerosing Cholangitis (PSC), something that she once likened to “living with a time bomb in your chest and not knowing if and when it’ll go off”.
PSC is a rare disease that has no known cause, cure or treatment. It causes the bile ducts both inside and outside the liver to become scarred, narrowed and eventually blocked. As more ducts become blocked, bile becomes trapped and damages the liver, leading to cirrhosis and liver failure.
PSC Symptoms often include:
• Chronic, debilitating fatigue
• Severe, uncontrollable itching
• Dangerous infections of the bile ducts
• Pain in the body’s Upper Right Quadrant
PSC sufferers frequently have associated autoimmune diseases, most commonly inflammatory bowel diseases such as Crohn’s Disease or Ulcerative Colitis. As well as all that they also have a significant increase in the risks of bowel, liver and pancreatic cancers. Basically, you just don’t want to get PSC.
Martine was diagnosed in 2007 with PSC when our daughter, Sophie was 15 months old. We’d never heard of PSC and within Singapore (where we lived at the time) there were no other sufferers or meaningful medical experience of the disease. Our family went through a very difficult period where our outlook was unsure and “Googling” PSC just delivered inconsistent, depressing information and a bleak prognosis. PSC Support gave us information and support to help us all come to terms with Martine’s illness.
PSC Support is a UK charity, totally run by volunteers, that helps people affected by PSC, including sufferers themselves, and their families. PSC Support makes a real difference by providing information and support to those affected by PSC, promoting PSC and organ donation awareness, developing effective partnerships with those involved with medical treatment and help support vitally needed research into PSC.They’re a small organisation that totaly “punches above its weight”.
We know at first hand the how frightening and isolating a diagnosis of PSC is for both the sufferer, their family and friends and the difficulty associated with having an uncertain future. That’s why Martine and I both volunteer for PSC Support and why I’m going to use my Kilimanjaro climb to raise awareness and funds for PSC Support. As a cause it simply couldn’t get any more personal for my family and I.
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