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Do you know someone with PSC?

12 things you should understand about having PSC

If you are a friend or family member of someone with PSC, we're here for you too.

  • PSC stands for primary sclerosing cholangitis but there’s more to PSC than a long name. In PSC, the body attacks the bile ducts, which can lead to infections and damage to the liver. Not only that, people with PSC most commonly experience fatigue, pain and itch, and have an increased risk of some aggressive cancers. That’s a lot to deal with mentally; try to be understanding and accommodating.
  • PSC is not caused by something we did. PSC is immune-mediated; there is no evidence to suggest PSC is caused by alcohol or any other lifestyle factor.
  • No amount of dietary or lifestyle advice helps. PSC has no medical treatment. What really helps is your patience and understanding.
  • Just because we look OK, doesn’t mean we feel OK. Many PSC symptoms are invisible, like exhaustion and pain but the impact these symptoms cause should not be underestimated.
  • PSC isn’t contagious! Don’t stay away. You really can’t catch PSC!
  • It’s hard to plan ahead when you have PSC. Those symptoms we mentioned strike unexpectedly, especially fatigue. We can appear fine one day, then barely make it up the stairs the next. When we cancel at the last minute, don’t give up on us. It’s not like we want to let you down!
  • Sometimes we need a little help. Juggling life with hospital appointments or working around our symptoms is hard. Providing some childcare or bringing round meals or doing some chores means the world! And we’re a proud bunch, so don’t ask because we might turn you down: just do it!
  • Beware of Dr Google. As a good friend or family member, you might want to read up on PSC but there’s a lot of outdated information out there. Ensure that your information source is reliable, accurate and evidence-based, and especially checked by medical experts, like the information from PSC Support.
  • Don’t try to make us feel better by saying something like, ‘At least you don’t have [insert scary disease]’. We know you are trying to help but by trivialising PSC like that you’re probably making us feel worse. PSC is serious, and requires lifelong medical care.
  • Don’t pretend PSC doesn’t exist. It’s better to say absolutely anything than nothing at all! It’s good to simply ask, ‘How are you doing today?’ Equally, know that PSC does not define us. We’re still the same person!
  • It’s OK if you are struggling to accept the news that your loved one has PSC. We know it is difficult. PSC Support’s Facebook group and PSC Information Days are for friends and family too. No one needs to face PSC alone.
  • PSC Support is working hard to support and fund PSC research to find a cure, and that can't happen without you.  Thanks to the generosity of our wonderful fundraisers and dedicated volunteers, we are the leading voice for people with PSC in research and drug development. Get involved if you can!

Thanks to our PSC Support Facebook group for helping to compile these tips.

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