The PBC Foundation is the only UK based organisation that specifically deals with PBC.
Immediate reflections on PBC Day 2015
It was ever so nice to meet up with friends, colleagues, PBC Foundation members, family and of course some lovely little dogs to have a walk through the beautiful Holyrood Park to celebrate International PBC Day. As you have seen from previous writings, ‘Movement as Medicine’ was the theme and we did ourselves proud. Although the walk was hilly, some of our number (including Esther who has PBC) managed to climb to the very top of Arthur Seat – I would imagine this to be perhaps 1,000 feet or so and not for the faint hearted!! We strolled through beautiful parkland enjoying fantastic views over the Forth estuary chatting, laughing and obviously, sharing ideas in talking about some of those of our membership, who are less able and what positive things we at the Foundation, can bring to them.
We stopped half way around the park for a rest, Mhari very thoughtfully supplied teas and coffee and her daughter Niamh made beautiful ‘PBC cakes’ for us to share. Not that I had time to enjoy these goodies as Holly disappeared into the bushes so my brother and I scrambled in after her – she eventually came out as we were crawling through the thicket of nettles on hands and knees!!
As all this was going on, I am to understand that amazing messages were being tweeted and shared on Facebook around the world regarding all the different aspects of PBC. There was heartening stories and photographs from post-transplant patients; one lady who, in February this year, had two transplants within five days sent a photograph of herself digging her garden on Sunday. The daughter of one of our members sent a lovely photo of her mum who, eighteen years on after transplant, was looking fit and well. Liver transplant is only for very few of sufferers of PBC but how heartening for those looking down that barrel to know how well the procedure works in giving the PBC sufferer their life back.
More stories will be printed in the next Bear Facts and also on our website BUT for me – to know whilst we were enjoying our walk, that PBC sufferers and those affected by the condition were reaching out to each other across the globe was such a phenomenal feeling! Bungee jumps in the USA, climbing the Brecon Beacons in Wales, dog walks in Blair Atholl, aerobic session and barbeque in Melbourne, cakes and jam sale in Aylesbury, a lunch in Trixie’s house in Oxford, runners running on our behalf in the Great North Run and on it goes….. Did I ever think we could achieve this nineteen years ago when the Foundation began? No I didn’t but then, how was I to know what amazing people there are out in this world who willingly give their time, expertise, care, support, understanding – and more, to those in need!