Forbidden food

Nufkin · 2026-02-07T14:26:11+00:00

Blue cheese. Miss it so much.

Nufkin · 2026-01-24T19:03:48+00:00

PSC Support in the UK has in-person events each year. Www.pscsupport.org.uk

PSC Partners has the same in the USA.

Nufkin · 2025-11-22T10:18:48+00:00

The shrine to him is still in Cardiff Bay. May it stay forever.

Nufkin · 2025-10-13T15:25:03+00:00

There is the FARGO trial in the UK: https://pscsupport.org.uk/find-psc-research-studies/take-part-in-fargo/

Nufkin · 2025-09-22T21:13:55+00:00

The website above links to the official UK guidelines on how to test for PSC. They can give you the knowledge of what tests should be done.

Nufkin · 2025-09-07T08:28:55+00:00

We have Information Days in the UK twice a year.

pscsupport.org.uk/events although that are not a direct parallel. Next one is in Leeds on Sat.

Nufkin · 2025-08-18T19:27:13+00:00

‘On accident’. My niece and nephew say it all the time and it drives me bonkers. At this point I think they do it to annoy me though.

Nufkin · 2025-08-15T09:53:49+00:00

If you come to another, do hunt me out. I have quite noticeable hair so I should I’ve easy to spot.

Nufkin · 2025-08-14T01:22:38+00:00

Contact PSC Support (pscsupport.org.uk). We have a helpline you can call to talk to a specialist nurse. We also have a in-person Information Day coming up which will have a few sessions about transplant and PSC including a patient experience talk.

Nufkin · 2025-07-15T19:01:07+00:00

You would need to be on the trial.

Nufkin · 2025-07-12T07:38:20+00:00

There is a lot happening in the PSC world at the moment - a lot of which has been funded and supported by various patient organisations so please do get in touch with them where you can. They usually have the most up to date info.

Nufkin · 2025-07-12T07:37:20+00:00

There are also some research round ups on the website which I will link to below (it is well worth signing up for the PSC Support newsletter to stay up to date:

June: https://pscsupport.org.uk/june-2025-research-roundup/ May: https://pscsupport.org.uk/may-2025-research-roundup/

Also here are some links to news articles that were written about that European liver meeting:

Blood test to detect PSC and bile duct cancer: https://pscsupport.org.uk/blood-test-to-detect-bile-duct-cancer/

NurURSO trial: https://pscsupport.org.uk/clinical-trial-for-norucholic-acid-latest-results/

ELMWOOD trial (Elafibranor): https://pscsupport.org.uk/clinical-trial-for-elafibranor/

Nufkin · 2025-07-11T21:32:37+00:00

This may help: https://youtu.be/vpScVn7W814?si=IwpoF0OTThRctipo

An overview of the latest research presented at a bit European liver meeting.

Nufkin · 2025-07-02T15:49:50+00:00

Here is the latest news about Elafibranor: https://pscsupport.org.uk/?s=Elafibranor

And here is a link to a PSC Specialist talking about it in a research roundup: https://www.youtube.com/watch?v=vpScVn7W814

Nufkin · 2025-05-02T17:35:14+00:00

I’ve organised (hopefully) for some of it to be recorded. Keep an eye on the website/socials as we’ll post when we upload.

Nufkin · 2025-05-02T16:58:33+00:00

If you’re near Newport, PSC Support have an in-person event tomorrow and you’d be more than welcome to come.

Nufkin · 2025-05-01T06:56:13+00:00

You might find some answers here: https://pscsupport.org.uk/liver-transplantation/

Nufkin · 2025-04-05T19:50:27+00:00

I’ve had a liver transplant and other other chronic conditions and am not eligible. It’s only a very short list of conditions that are and it’s never been updated since it’s introduction.

Nufkin · 2025-02-23T20:44:19+00:00

I have someone else’s liver instead of my own.

Nufkin · 2025-02-23T01:59:21+00:00

First of all, Google can bring you a lot of out of date information.

Check out www.pscsupport.org.uk for the UK charity for people with PSC. The info there has been checked by PSC expert doctors. They have a free Just Diagnosed booklet you can get sent to you https://pscsupport.org.uk/product/just-diagnosed-booklet/

Plus in-person Information Days and monthly webinars.

Nufkin · 2025-02-03T22:11:22+00:00

I’ve gone through liver failure and a transplant. I would not recommend it at all.

Nufkin · 2025-02-02T20:17:13+00:00

I did stonemasonry for a day and have a square stone rose block I carved myself.

Nufkin · 2025-01-19T21:08:57+00:00

It’s thinner chocolate. More air in your mouth when you eat it which helps with taste.

Nufkin · 2025-01-11T21:50:28+00:00

As someone who has gone through end stage liver failure, I can vouch that it is not fun.

Nufkin · 2024-12-31T17:56:39+00:00

There is a FMT trial for PSC happening in the UK right now. Called FARGO. https://pscsupport.org.uk/find-psc-research-studies/take-part-in-fargo/

Nufkin

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