Ten tips on handling your diagnosis from people living with PSC
- Step away from Google
A PSC diagnosis is a lot to take in and it is natural to want to know more, but there’s a lot of outdated information out there.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.
- There is no one size fits all for PSC
Remember everyone is different - not everyone needs a transplant. In fact it’s only around half. Many people live a normal life with few or no symptoms, while others do progress to having advanced liver disease.
- Embrace questions from others, but also accept that they won’t always understand.
Your loved ones might be struggling with your diagnosis too, and that’s OK. You can use our 'What is PSC?' graphic to help explain PSC and share our information for friends and family. We've got some great tips for the people around you too!
- Know the signs of a bile duct infection
Know the signs so you can get medical treatment quickly. It’s very helpful to print off our bacterial cholangitis (bile duct infection) leaflet or get the digital version in the PSC Support App to show doctors who may not be experienced with PSC.
- Live your life
PSC doesn’t need to define who you are, and we encourage everyone to live life, and not let the thought of PSC stop them.
- Go with the flow
Accept tougher times, listen to your body and do what is right for you. Rest when you need to. Get to know how fatigue affects you and how to manage it. Perhaps plan rest days after a busy day or activity. Know it is OK to be not OK!
- Don’t expect your GP to know all about PSC
PSC is a rare disease. Only 7 in a million people are diagnosed with PSC per year. It’s unrealistic to expect our GPs to understand a rare and complex disease like PSC. Make sure your consultant keeps your GP in the loop about the care of your PSC, and do show them our website for links to the latest clinical care guidelines and best practice.
- Don’t put up with itch!
While there is not a cure for PSC (yet), there are treatments for symptoms such as itch. Speak to your PSC doctor about any new symptoms you experience and what medicine options you might have.
- Don't bury your head in the sand and worry about things in silence
No one needs to face PSC alone - join our amazing Facebook group and come to our next PSC Information Day.
- Look for research and get involved!
There is hope. PSC Support is working hard to support and fund PSC research to find a cure and we will not stop until we have one.