I have been asked many times what is PSC and what does it stand for. After all, while writing my posts PSC is referred to quite often. However, after explaining PSC to the wider audience, I have heard people calling it PCS, that strange liver illness and more often than not the response is… What did you say?
There is some truth in the comment that we PSCers are a strange bunch or as I would rather put it, a unique bunch. When I say unique, I mean in the sense that we are all different, but at the same time similar.
Q. So what is PSC?
A. To those that do not know, it is plain and simply a rare autoimmune disease that attacks the liver. Well, actually to go a little further, PSC has a huge impact on the liver’s bile ducts both inside and outside of the liver.
As mentioned on the British Liver Trust website “PSC is an uncommon chronic liver disease in which the bile ducts inside and outside the liver progressively decrease in size due to inflammation and scarring (fibrosis). The disease may occur alone, but frequently is associated with inflammatory diseases of the colon, especially chronic ulcerative colitis.”
The symptoms and complications of PSC are wide and vary from person to person, but include:
* Inflammation of the bile ducts
* Flu-like symptoms that lead to infections, chills and fevers caused in the main when the bile ducts connected to the liver get blocked with bile
* Deficient in vitamins
* Unable to tolerate certain food types
One thing to keep in mind is that at the present time PSC is not preventable and is not curable. Often as in my case and as the illness progresses, the medication stops working and this, in turn, leads to having to have a transplant.
Having PSC does not mean the following:
*We are a lazy bunch. See the first point above tiredness. Tiredness is a huge part of the illness and can be very debilitating.
I tried everything before my transplant to keep awake and to fight fatigue, but in the end, I am not sure if it really helped or just took the edge off of it. To see how I got on fighting fatigue pre-transplant you can read my blog post fighting fatigue.
* We are not quitters – Having PSC teaches you to become a stronger person in your everyday life and as a sufferer, you survive day by day as best you can. To me, it is like being on a roller-coaster of a journey with many ups, downs, twists and turns.
So, again you have heard the abbreviation PSC and are probably at the point of thinking yeah, yeah… Come on what does it stand for? Well, PSC stands for Primary Sclerosing Cholangitis.
* Primary = First
* Sclerosing = To become hardened. In this case, it means hardening of the bile ducts that occurs over time and as the illness progresses.
* Cholangitis = Inflammation of the bile ducts which occurs when the bile ducts are blocked with bile.
To conclude, PSC is a debilitating, invisible illness that teaches you to not take anything in life for granted, to cherish life and to live each day to the best of your ability.
Thanks for reading.
Peace, love and light x