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Andy – From Fear to Hope

From Fear to Hope: The Power of Community in Facing PSC

June 1, 2021

Once upon a time, after quite a few years of testing, Andy Dench was diagnosed with primary sclerosing cholangitis (PSC). PSC is a disease so rare that not many have even heard of it! It is a disease so rare that not only is there no cure, there is no treatment and it seemingly comes with very little hope too.

Andy, of course, needed to know more about the disease he was going to be forced to live with so he turned to ‘Dr. Google’ and began his research. One search for PSC and he was immediately bombarded with page after page after page of what Dr. Google thought were the awful realities of his fate with PSC, including an answer to the question “How many years do I have?”. When Dr. Google’s answer to that question was not a big number, as you can imagine, it hit him like a tonne of bricks. Andy fell into a tailspin of despair causing a lot of anxiety, depression, and fear.

It all seemed so hopeless and scary and incredibly lonely. Until…

One day, when Andy was deep in his tailspin into the darkness, he stumbled across a flicker of light! An organization called PSC Partners Seeking a Cure had two Facebook support groups. The public group shares posts and discussions about PSC with anybody on Facebook, and the private group is intended only for those who actually live with PSC.

Shortly after joining, Andy got a private message from a group member reassuring him that he was definitely not alone and that there will always be members available to talk to or to answer any questions he might have. These were not like any other Facebook groups he had tried before…these felt hopeful, which was a bit shocking given the reality of PSC, but nevertheless he was very happy to have found them.

As time went by Andy discovered that these groups were made up of the most caring, understanding, knowledgeable, and helpful people he’d encountered on his journey so far. He read post after post from people asking questions about things he was also experiencing. And every post was full of supportive, uplifting, and helpful comments! Every single time someone in one of the groups reached out for help, they were always met with such tremendous support.

This was often accompanied with private messages from other group members offering phone numbers should they ever want to talk to someone who would ‘get it’ in a way that no one else can…unless you live it.

Andy saw how close the PSC community was, coming together in their shared feelings, understanding, and experiences with PSC. Of course some of the posts he saw scared him, like people talking about some of the more advanced symptoms that he had not experienced or about liver transplants, or even about PSC friends they had lost. Yet other posts lifted his spirits, like people talking about having lived long full lives despite having PSC and others about all the things they’d accomplished despite their PSC diagnosis.

A common thread Andy saw throughout all of the posts in the open and closed PSC Partners Facebook groups was that every group member really did experience a very strong sense of community and support, a sense of family. It did not take long before his sense of panic eased; of course it is still there, it will never fully go away, but it doesn’t feel so intense anymore.

These Facebook groups have been a lifesaver for a lot of people; a literal beacon of light in the darkness of this PSC diagnosis. Andy said “I have never been one to reach out to anyone, for anything, but this time I did, and it is my sincere hope that anyone who has PSC or is a caregiver/family member of someone who has it, does too. I strongly recommend checking the groups out and reaching out to the people. Allow yourself to feel the love and support that they’ll give you. The experience of being in contact with other people who completely understand what you’re going through is so very important.” If you are looking for support, visit our Support page [internal link to Support on Get Involved Page] for information about PSC Partners Facebook groups, ZoomRoom calls, and the mentor program.