The PBC Foundation is the only UK based organisation that specifically deals with PBC.
Celebrating the PBC Community we've built together
Celebrating International PBC Day on the 11th September is keeping us busy here in the office. However, we are indeed very happy to be involved in the preparing and planning of events which we hope will be enjoyed by many. We hope too, that what we are doing, will bring about valuable awareness for those living with PBC and for many, their struggle and difficulties.
Every single day I live with fatigue and lethargy to varying degrees; it’s a struggle and a way of life which I have lived with for many many years. However, I feel lucky that after a twenty two year old diagnosis, I am here and still going strong. I am able to walk my wee dog, (meeting nice people on the way), cycle a few miles at the weekend and do a bit of aerobics. The price for carrying out these activities is to forget about the hoovering and dusting (which I pass onto my husband!). I do think I have made the correct choice and I no longer feel guilty: quality of life is important to everybody suffering from a chronic condition. There is more to be had in life too when not fussing about with housework!
This morning, I am feeling extremely emotional! Mhari and I are leaving for London today where we will meet with PR people who have arranged radio interviews for a UK wide audience with a possibility there may be some television exposure too. Wall to wall PBC. When I was diagnosed with PBC all those years ago as a young woman of 38 yrs, there was no-one to help me, to talk to, no leaflets, no support. Confronted by such a void I was scared out of my mind. Nobody could help me.
Why am I feeling emotional today? I have been taking stock of the 20 years of the Foundations existence, all it’s achievements and the enormous support network that now exists. Information is to be had by pressing a few buttons. Talking to another PBC sufferer can only take minutes and not years as was in my case. We travel around the country, always looking forward to meeting our members and offering help and support in any way we can. Sure, we hear sad stories but we also hear happy ones and we are constantly humbled by people’s strength in coping with their own PBC and their enormous willingness to help others.
The Foundation would never ever survived without your support. The staff that look after us are just fantastic; they live and breathe PBC. I never need to ask if they can stay on for a bit of extra time – they volunteer, ensuring that people living with PBC have whatever they need from us as quickly as possible. They not only inspire each other, but also those companies who work with us, such as the company who look after our software and hardware, the water company, the telephone company, the stationers. They all support us in one way or another.
There are many activities going on around the world to celebrate our ‘special’ day. Members, family and friends are enthusiastic and up to all sorts. My elder son is climbing the three peaks – he has been working so hard that he has had little or no time to train! He tells me that he knows he will be tired, fatigued and exhausted at varying times of his long journey. He also tells me that he wouldn’t imagine that he would feel much different from a PBC sufferer! My younger son is on his honeymoon but on his return, he has undertaken to do all he can for the success of our 20 year anniversary ball. Help much needed.
Thank you to all those special people, who, put so much back into the Foundation so as it can continue to help and support the hundreds of thousands of PBC sufferers across the world! All those involved with the PBC Foundation have, for sure, left this world a little better than how it was found. We shall keep going until they find a cure – then we can all go home!