Today is #PSCAwarenessDay. I have PSC and sometimes it can be tough, both physically and mentally. As not many people know about PSC, and as I become a bit more comfortable talking about it, I thought I’d shed some light on this little-known disease...

1. PSC stands for Primary Sclerosing Cholangitis. It’s a rare and progressive immune system disorder that damages the bile ducts and liver.

2. PSC is rare! It’s difficult to calculate how many people have it, but estimates put the number of people living with PSC in the UK at around 6000.

3. More than 70% of people with PSC also have a form of IBD, either Crohn’s Disease or Ulcerative Colitis. I have Crohn’s

4. PSC is more common in men than women, and tends to be diagnosed in your 40s or 50s. However, PSC can develop at any age (I was diagnosed aged 12).

5. Common symptoms include:
fatigue
fever (caused by frequent infections)
‘brain fog’
pain
itch (caused by build up of toxins/bile acids in the bloodstream)
nausea/sickness
yellow skin (jaundice)

6. In addition to IBD, PSC increases your risk of developing other conditions, including: autoimmune disorders, osteoporosis and certain cancers. So, people with PSC need frequent blood tests and scans, and annual colonoscopies to screen for bowel cancer.

It’s worth adding that my screenings have always been clear (woo!) and, other than my Crohn’s, the only real issues I’ve developed are a harmless fast heart and pesky weak bones in my spine (PSC patients tend to lose bone mass at a rate of 1% per year).

My crumbly spine could also have something to do with this though

7. There is no known cure or treatment for PSC, but some medicines and supplements can help alleviate symptoms and reduce PSC’s associated cancer risks.

8. There are lots of promising PSC studies happening around the globe right now! But more funding and research is needed. You can find out all about it on the @PSCSupportUK website (this is also the source of many of the stats in this thread) http://pscsupport.org.uk 

This is by no means a pity post as I’m doing really well all things considered. I just wanted to add my voice to #PSCAwarenessDay. Please feel free to DM me if you have any questions or would like links to stats or support