Connect with others
Joining our active Facebook group will help you to contact other people affected by PSC, ask questions and talk about living with PSC.
We created the group to provide emotional support and information to people with PSC and their families. We have created this safe space to ask questions and discuss life with PSC.
'The first 3 months were a whirlwind and the best thing I did was find this group. Once again, I reiterate everyone has a different journey. However support is always available.'
'...and I (and many others) totally understand what you're going through. Any questions, do feel free to ask - or even to have a moan 🙂 I don't post all that much, but this is fantastic group to be in - the support you'll find here is second to none.'
'Try not to feel down. Come here for support - this group is great. There will be someone in your area here, someone who has been through the same thing.'
'Like you I felt all at sea when I got my diagnosis, but this group will help you understand things. You are not alone.'
Dr Google nearly sent me off the edge, my mind was all over the place. And, 3 months later, and having visited this forum almost daily, things are now less scary and overwhelming.
I'd like to take a wee moment to say thank you to admin and moderators over the past few weeks!
There have been so many posts asking about COVID-19 and so much conflicting advice from the government and experts, but I've personally found the speediness of approving posts and commenting with up to date information remarkable and I know there will be so much more going on behind the scenes, not just for the group, but personally as well, so thank you.
It is so much appreciated to get this information and support. Thank you all so much x
'The guys who oversee this group and the members are the most helpful and positive people I know. It really is a safe place to be for information and support. I’m so grateful and lucky to have found you.'
'As scared as you are now this site will support you and help you cope with everything you need
And more ...
You’ll get lots of support ... x'
'This group has been helpful in just a few days that I’ve been a member, thank you very much.'
'welcome to the home of psc'
'you’re in the right place, this is a wonderful, knowledgeable, kind and supportive group. '
'As you’ll gather through this group, everyone’s journey with PSC is different. I’ve dealt with this journey by taking each day as it comes, remaining very positive, and getting on with my normal life as much as possible. We’re all here and in the same boat if you or your son need any advice or support x'
'This group is wonderful and has supported me often (my partner is the PSC sufferer) xx'
'The group has been fantastic so far and I only joined today so I will definitely be telling my son to join!! '
'try and avoid google as much as possible although it’s easier said than done. If you are looking for information I’d suggest using PSC Support as the starting point. The content is reviewed and signed off by both specialists and patients. I’ve used it a lot. Hope this helps.'
'try to attend a PSC support information day when they come up. A great chance to hear from expert Drs and chat to others who have PSC and their families Really helped us for our 19 year old son.'
'This group is awesome too. Sending you a massive hug'
During these unprecedented times with many of us staying at home to distance ourselves from others, we believe it is so important to stay connected with the outside world.
Come and join us for our virtual meet-ups. A chance to connect, chat and 'meet' others.
If you join using a tablet or phone, it might make you download the Hangouts Google Meet app. You don't have to do that if you simply paste the link into your browser. NB It likes Chrome best!
To find the Drop-In URL, go to the Topics section of the Facebook group and find Drop-Ins.
We're really enjoying 'meeting' you and sharing tips on how we are navigating this change in our lives (and seeing everyone's pets!). Don't be shy!
What patients are saying
"I'd like to thank Martine and Maxine for organising the daily video chats we've been having, it's been really nice seeing some new and some familiar faces for the first time!
We've been busy putting the worlds to rights in our chats, having pet show and tells and enjoying some laughter!
Honestly, don't be scared, come join us for the next chat, it's a break from everything and a chance to interact with people many of which we've only chatted to in this group with words!
Say as much or as little as you like, I'm extremely introverted (and socially awkward) but I've managed to string a few sentences together!
They're not long chats, but enough to break up the day and maybe it might be something that you look forward to!"