PSC Support

Living with PSC can be hard on your body 𝙖𝙣𝙙 your mind. But you are not alone. It's important to reach out to others, talk about mental health and ask for help when you need it. 👉 pscsupport.org.uk/get-support/ #MentalHealthDay #WorldMentalHealthDay #LetsBeatPSC

Martine has added another feather to her cap as our @basl_events roaming reporter! 🪶
She caught up with Dr Deepak Joshi for a quick chat about his talk on recurrent PSC (#rPSC) and how #livertransplant can improve patients’ lives. More #BASL2025 updates coming soon! #LetsBeatPSC

We're working with a leading #PSCresearcher to plan an international clinical trial to assess #vancomycin in people with PSC. Share your views and experience of clinical trials and vancomycin? 2-3 mins will help us plan the right research the right way.
www.surveymonkey.com/r/VPSC2005sm #LetsBeatPSC

🛍️ Amazon Prime Days are here (7–8 Oct)!
Shop amazing deals & raise FREE donations for PSC Support through @easyuk. It costs you nothing! Every purchase funds vital research & support.
👉 Join here: www.easyfundraising.org.uk/causes/pscsu...
#AmazonPrimeDay #PSCSupport #LetsBeatPSC

October is Free Wills Month - an opportunity to write or update a simple will for free. There’s no obligation to leave a gift, but any legacy you choose to leave helps us provide vital support, information, and research.
👉 Learn more: pscsupport.org.uk/wills #LetsBeatPSC

Three years ago Jonny's PSC was making him desperately ill and he was added to the transplant list.
🟣7 mos later he received a life-saving liver
🟢10 days later he was home
🟠12 wks later he was back at work
🟡Today he’s running @great_run Scottish Half 💪
🔗 pscsupport.org.uk/psc-and-me/j...

The big day is nearly here! Katie's taking part in the @great_run Scottish Half Marathon, raising funds for #PSCSupport. 'This rare autoimmune condition has no cure or treatment as very little is known about it. PSC has had a massive impact on Ella.'
➡️ buff.ly/4fMsH51

Note: This webinar will cover these subjects in general terms. No personalised financial advice will be given.

Having PSC and dealing with mortgages, insurance and financial planning can be confusing. Pam Brown and her family work as mortgage, insurance and finance specialists and Joe, Pam's son, also has PSC. Register today to learn more & ask your questions ➡️ us06web.zoom.us/webinar/regi...

Next week we’re heading to Belfast for the @basl_events Annual Conference. We’ll represent patient voices, build partnerships & share insights to shape future research. Updates to follow! #BASL2025 #PSCsupport #LiverDisease @mirumpharma @LiverTrust
📸 #TBT Last year in Harrogate

October is #LiverCancerAwarenessMonth, focusing on early detection, support for those with liver cancer, and remembering loved ones. People with #PSC face higher cancer risks and should discuss screening with their doctors.
Learn more about risks and screening
ℹ️ buff.ly/bw0lyva #LetsBeatPSC

What are PSC Variants? Dr Roger Chapman joined us earlier this month to shed some light on this topic and answer your questions. You can watch (or re-watch) this session now on our YouTube channel. youtu.be/dAqnVSXDYmA #LetsBeatPSC #SmallDuctPSC #PSCUC #PSCIBD #LargeDuctPSC

The microbes inside your gut keep everything in balance. But if the balance tips the wrong way, problems can arise. The FARGO trial is asking: what happens when we change the PSC microbiome using Faecal Microbiota Transplants (FMT)?

Want to know more? buff.ly/DH7MDl2 #LetsBeatPSC #FARGOTrial #FMT

Tom’s 2021 liver transplant for PSC gave him back energy & normality. 💗
As #OrganDonationWeek ends, have you registered your wishes?
👉 buff.ly/XfSzxPg
#ODW25 #LetsBeatPSC

Andy and his donor liver have spent over 20 years together. Twenty years with his wife, family, friends & community. Reaching milestones he never thought he would.
This #OrganDonationWeek register your wishes with @NHSOrganDonor & talk to your loved ones. www.organdonation.nhs.uk/register-you...

25 years ago, Liz’s husband Rick became an #organdonor after his sudden death at 38. His gift brings comfort to the family, and hope to others. “We’re so proud of the gift he gave. A little bit of him lives on.”
Confirm your decision ⬇️
www.organdonation.nhs.uk/register-you... #ODW25 #DonorFamily

Last month we shared Tom’s wait for a 3rd liver transplant for PSC. GOOD NEWS: he’s had it and recovery is going well! Thanks to 3 generous donors, Tom gets another chance at life, family & memories. Read his story 👉 pscsupport.org.uk/tom/
#OrganDonationWeek #LetsBeatPSC #LiverRecipient

At 23, Gemma’s PSC diagnosis forced her to leave Australia as her health rapidly declined. After 2yrs on the transplant list, she got the call. Thanks to her donor, she can now chase her dream of nursing 💗 A single donor can save up to 9 lives.
➡️ www.organdonation.nhs.uk/register-you... #ODW25

@NHSBT has reviewed how donor livers are offered and draft recommendations are ready. You’re invited to give feedback at online webinars:
📅 23 Sept 2025
🕑 2-3pm (charities/groups)
🕔 5-6.30pm (patients/families/public)
➡️https://buff.ly/iRY108N
#OrganDonation

Right now, over 8,000 people across the UK – including many living with PSC – are waiting for a lifesaving transplant. This #OrganDonationWeek we’re encouraging everyone to register their decision and talk to their loved ones.
➡️https://buff.ly/XfSzxPg #LetsBeatPSC #OrganDonation

Olly lives with PSC & Ulcerative Colitis but tomorrow he’s taking on 13.1 miles to raise awareness & vital funds. “PSC Support has become very close to mine and my family’s heart.” Support Olly & his family by donating or sharing his story!
buff.ly/CfPLWjS #LetsBeatPSC

@pscsupport.bsky.social representing #PSC patient voices in Poland today #LetsBeatPSC

Join us for our our first ever Information Day in Belfast on Fri 10 Oct:
🗨️ Hear talks from PSC experts and patients
❓ Take part in Q&A sessions
🧑‍🤝‍🧑 Connect with others affected by PSC, including friends and family
Register now ➡️ buff.ly/0X4NiRI @basl_events #LetsBeatPSC

UPDATE 📢 Following our previous post about the national shortage of Rifampicin in the UK, PSC Support and @PBCFoundation have released a joint statement.
Also available to read on our website.
➡️ buff.ly/f4VFqpj
#LetsBeatPSC #PBC #PrimaryBiliaryCholangitis #Liver #PSCItch #PBCItch

For people with PSC, patient safety means being heard, advocating for their health, and having tools to support urgent decision-making. Our free PSC Alert Card helps patients & clinicians act fast when acute cholangitis is suspected.
👉 pscsupport.org.uk/bacterial-ch... #worldpatientsafetyday

What is small-duct #PSC and how does it differ from 'just PSC'? What about PSC/AIH Overlap? And what is IgG4-related PSC?

Dr Chapman talks us through these variations and answers your Q's tonight (Tue 16 Sep 7pm).

Register now for joining details: us06web.zoom.us/webinar/regi... #LetsBeatPSC

A glimpse of our #PSCSupport #InformationDay in Leeds. These free events are held throughout the year to bring together patients, families, and hcps. They're a space to share experiences and learn from leading voices in PSC care and research. Up next...Belfast! buff.ly/XHovfcH #LetsBeatPSC #PSCInfo

This #PBCAwarenessDay we’re shining a light on the differences between PBC and PSC and available support. Both affect the liver but they are distinct diseases. In the UK @PBCFoundation and @PSCSupport are here to help. You're not alone.
➡️ pscsupport.org.uk/psc-and-othe...
#PBCAwareness #PSCAwareness

Best of luck Dave! We know how hard you've been training for this amazing event while also managing your health journey. One stroke, one step, one pedal at a time. You got this! 🏃 🏊‍♂️ 🚴‍♂️ #LetsBeatPSC #PSCSupport #PSCFundraiser #FundraisingChamp @ironmantri

PSC can affect anyone, at any age, and no two experiences are the same.

Some people don’t have any symptoms, while others live with challenges like fatigue, brain fog, jaundice and itch. Read Nick's Story and consider sharing yours pscsupport.org.uk/psc-and-me/ #PSCStory #PSCandMe #LetsBeatPSC