This weekend I attended, for the first time, a meeting of PSC Support. This is a UK-based support group which helps people who, like me, are affected by a little known condition called Primary Scelrosing Cholangitis, or PSC.
PSC is a disease that affect the bile ducts, causing inflamation and scarring which eventually causes damage to the liver. It's cause is unknown and there is no known cure at present. It progresses slowly and those affected can be asymptomatic for many years.
I had been a little uncertain whether to attend or not, since at present, I remain free of troublesome symptoms and in general am feeling well. I was afraid that I might be upset to see others who were in more advanced state of this disease, but this was not the case.
Everyone was extremely friendly and the event was well-organised. A very interesting talk was given by Professor David Adams of the University of Birmingham, where research is on-going into this disease. Although it is a complex subject, Professor Adams managed to present in such a way as to be understandable to those present, and it was encouraging to hear that advances are being made in knowledge of the mechanisms which cause this condition which could lead to future treatments to halt its progression.
PSC-support is a small charity as this condition is not common and thus not well known. The charity primarily provides support to sufferers and carers, bringing people together and keeping them informed. This is an important role, as it can be very frightening to find out that you have an incurable condition, not knowing how it is going to affect you or what help is available. Personally I have been fortunate to be under the care of a leading expert in this condition, but many people are not so lucky and have difficulty getting treatment or even a correct diagnosis. This charity, and its website, provides vital help and information. One of its aims is also to raise awareness of this condition amongst the general public and the healthcare profession, and to thus bring assistance to those who need it.
For this reason I have decided to make this post about the charity and the fact that I have this condition. I will try to support this charity group in the future, and I am very grateful for the work done by them in helping sufferers. I am very glad I attended the meeting, and hope to attend many more in the future.