Turning isolation into inspiration: A caregiver’s perspective on PSC and finding hope
March 1, 2024
As a mother and caregiver of a young adult diagnosed with primary sclerosing cholangitis (PSC), Jane shares her perspective of caregivers within our PSC patient community. Jane’s son was 17 years old in the fall of 2020 when he was hit with a bout of incredible abdominal pain, diarrhea and fatigue. Her son was admitted to the hospital, and because of COVID-19 only one person was able to be there at a time, but she’s grateful for the care and attention her son received as a pediatric patient in Montreal. With numerous diagnostic tests to check for the “usual suspects” when patients land in the hospital with these types of symptoms, it was an ultrasound that showed a minor blockage in the bile duct. The care team decided this was a singular anomaly and over the 5 days in the hospital, her son was rehydrated and began feeling better and was discharged.
With some dietary changes, including removing lactose and gluten, her son felt better and experienced little to no symptoms over the next year. However, things changed for her son after he returned from a trip with friends that left him effectively bedridden for the better part of six weeks. His doctor ordered a liver biopsy and while it showed nothing abnormal but “it couldn’t rule out a rare disease of some sort.”
As any parent does, Jane worried about her son and could tell something wasn’t quite right. “He was a skilled skater and hockey player, and I noticed times when he just didn’t have the same energy,” Jane explained. After diligent persistence and getting into a liver specialist in Montreal, a second biopsy was ordered in the spring of 2022 and this one showed small duct PSC.
Like many patients hit with this abrupt diagnosis, the news can be pretty devasting. Throughout this time, one of her son’s worst symptoms was pruritis and this perpetuated a negative cycle compounded with insomnia from the severe itching. While not getting the most attentive care from his doctor, Jane sought a better solution. “I knew my son deserved better.” That’s when Jane came across PSC Partners Canada and things began to change as she learned about the resources and centres that specialize in PSC.
Jane was eventually able to secure a referral to UHN in Toronto and get an appointment. Within moments of their first appointment, Jane knew they were receiving “a level of care that’s the best of the best.” Fed up with the horrendous itching, her son was immensely relieved to hear “of course, there’s lots we can do about that” by his new doctor, a PSC specialist. Not only were her son’s questions answered about PSC, but he was able to receive assistance in managing his IBD.
“It really changed our lives to go there,” says Jane in referencing the care her son received through UHN. Jane’s role as caregiver has evolved now that her son is a young adult. Like many young folks entering adulthood, Jane explains that her son “just wants to live his life.” While always being mom, Jane still likes to keep an eye out for logistics and appointment scheduling; however, she now has the confidence that he has the support available from someone he trusts to help navigate what’s to come ahead.
Jane and her son attended the “What the Cell!?” Canadian patient event in October 2023 and had a transformative experience. “I met other moms there and overheard two or three of them saying their kids also had to quit hockey and then so many things just clicked.” Jane and her son went from knowing no others with PSC to an entire support network.
While the decision to attend the event wasn’t easy, once her son met others his age with PSC, his outlook on living with the disease changed for the positive. In fact, three of them attended a Leaf’s game together shortly after meeting each other on day one of the conference. They still keep in touch all these months later.
Jane is complimentary of PSC Partners Canada, “I can’t say enough about PSC Partners Canada. If it weren’t for them, I don’t think we’d survive. We couldn’t have made it this far.”
Talking publicly about PSC is a very personal decision. We’re respecting the privacy of the PSCer by publishing an anonymized account as told to PSC Partners Canada volunteer writer Matt Hodgson. For the purposes of this article, we are referring to the mother as “Jane.”
