World Mental Health Day 2019

This World Mental Health Day, we are highlighting the emotional burden people with PSC deal with every day. Respondents in our 2016 Research Survey told us that the emotional impact was the most difficult part of living with PSC.

 

Most difficult part of living with PSC
Walmsley M, Leburgue A, Thorburn D, Hirschfield G, Trivedi P. Identifying research priorities in primary sclerosing cholangitis: Driving clinically meaningful change from the patients' perspective. Journal of Hepatology 2019 Apr 1 (Vol. 70, pp. E412-E413).

An emotional burden: why is that?

PSC is a disease that can strike at any age. It has no medical treatment, and increased risk of cancers and unpredictable daily symptoms, mostly ones you can't see. That's a lot to deal with, and for people with PSC, it is 365 days a year, not just on an awareness day.

Around ¾ of people with PSC experience debilitating fatigue. It's invisible, and hard to spot. They report that they get themselves through the working week, and simply crash at the weekend. They tell us that they often have to cancel plans at the last minute; not because they are lazy or can't be bothered, but because they experience tiredness that is extreme, describing it like hitting a brick wall. No amount of sleep relieves this fatigue. People with PSC feel guilty that they don't have enough energy to fulfil the role they want to play in the family life, and tell us they feel like a burden.

Around half of people with PSC experience pain and itch; more invisible symptoms. These, too, can be debilitating and must be managed by experts.

Daily Symptoms PSC Support
PSC Support: ‘Clinical need in PSC and clinically meaningful change: What is important to patients?’ and PSC Patients Europe Survey

Because PSC is unpredictable, and confers an increased risk of cancers and complications, understandably, people with PSC and their families may feel anxious and uncertain about the future. PSC is rare and complex, and even experts don't always agree on the best way to manage PSC. This results in variation in healthcare between hospitals and between doctors.

Just because someone with PSC looks OK, doesn’t mean they feel OK. The impact of PSC, both physical and emotional, should not be underestimated.

We encourage everyone with PSC to live their life and we've put together some tips on living positively with PSC.

Thank you

Together with dedicated researchers and PSC doctors, PSC Support is working tirelessly to improve the lives of people with PSC through support, research and advocacy. None of our projects and research would be possible without your continued support and fundraising.

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