Volume 5, Issue 3

March 2024

Upcoming EVENTS

Canadian Paediatric PSC Day

Watch: The Full Video of A Liver Love Story

Empower Wellness Study Participation

Fundraising Update

Stories from the Community: A PSC Caregiver

Canadian PSCers in the News

Upcoming Zoom Rooms & Events

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Canadian Paediatric PSC Day: June 1, 2024

Kids and teens get PSC too. And we live in amazing times where the tools exist to help paediatric patients and their families find each other and get through it together!

Please save the date! June 1st in Toronto, Canada, PSC Partners Seeking a Cure Canada is hosting its first Canadian Paediatric PSC Day!

This is an opportunity for paediatric PSC patients and their families to meet others in the community.

The agenda will include talks by specialists from SickKids, Toronto Centre for Liver Disease, and University Health Network / University of Toronto on:

  • Living with PSC
  • PSC and IBD basics
  • Canadian patient-partnered paediatric PSC-IBD study
  • Peer group time - an opportunity to connect with others in the same peer group

Registration will open in March and there will be travelships available on a first-come, first-serve basis. More information to come on childcare, agenda, and what to expect.

Keep your eyes on our social media pages and your inbox for updates!

This event is financially supported by a grant from the Chan Zuckerberg Initiative DAF, an advised fund of Silicon Valley Community Foundation.

A Liver Love Story

“It is easier to find a caregiver than to find a donor”.

Our Liver Love Story follows Jessica Travis, a patient living with PSC, and Ian, Jessica's husband and caregiver, as they travel down a curvy road in search of a living liver donor to save Jessica's life. Niall McKay, Emmy-winning writer and editor, host of our Living with PSC Podcast, and liver transplant recipient himself, produced this moving, touching short film.

Kristian recently met up with both Ian and Jessica Travis of Ajax, Ontario who shared some insights of their journey with PSC and in making their A Liver Love Story video.

Jessica was diagnosed with ulcerative colitis in 2002 and PSC in 2003. The PSC diagnosis came quickly after some of her liver enzymes were high and she had some itching. She was fortunate to have a doctor then who knew about the connection between PSC and ulcerative colitis. She had no idea that her liver was under stress at that time. 

Fast forward to the first quarter of 2022, Jessica’s health was declining more rapidly as time moved on . She went back on Toronto General’s liver transplant waiting list after initially being on it in 2013. She was advised by her hepatologist that a living liver donation would be her best chance at survival. However, after a few months of waiting, there had been no movement for applicants to be her live liver donor. 

So, during the summer of 2022, she and Ian started campaigning harder for living donor applicants. In August, Jessica distributed hundreds of cards describing her need for a live donation at a Norwex company sales conference. Friends, Shawna and Jackie, asked Ian and Jessica to start a Facebook page on their behalf to help raise awareness for people to apply to be a living donor. Their Facebook group grew to over 100 people almost overnight after the conference.

This had a huge impact on getting the word out as before, Jessica only had a secondary match (not the same blood type) as a backup donor. While some people had applied to be a donor, they were turned down for one reason or another by the transplant team. As people were hearing back about their applications they were sharing the experiences of applying and the answers they were getting on the Facebook page. This gave Jessica and Ian some sense of relief. Finally people were applying! Her urgent need was being shared online and people were willing to help.

But Jessica’s health was declining quicker in the fall of 2022, when she needed weekly albumin injections to help relieve her water retention. Weekly drives to Toronto General for Jessica’s injections were the new “norm” for them. Their hepatologist said that to turn the corner of needing and getting a transplant, it should be walked around slowly. But with the momentum of her health’s decline, they were reaching it was speeding up such that a transplant was needed soon. 

Without a match, this waiting was a tough place to be in for them both. Ian could not take it anymore seeing his wife of 14 years continue to suffer as the health of his family comes first. So, he applied to be a living donor, somewhat behind Jessica’s back. Even though they had talked about him applying much earlier, they were both hesitant for him to apply as it was only the two of them and they did not have someone who could easily be both of their caregivers after surgery.

Photo Credit: From Jessica and Ian Travis

With Jessica’s complicated medical history there was also concern around who they would find to be Jessica’s caregiver and advocate. Ian shared this serious concern with his pre-evaluation nurse.  She replied: “It is easier to find a caregiver than to find a donor”. As soon as he had heard this, Ian knew then that he had to continue with his application and informed Jessica of his intentions before she found out by herself. As it turns out, Jessica had already found out his application. She had seen the doctors’ letters to Ian on their shared myUHN patient portal online records. Lucky for Ian, Jessica couldn’t be too upset with him, after all, he was going to be her donor!    

The transplant team at Toronto General then called him within two weeks of his application submission. Ian then had extensive health evaluations to see if he could safely donate and would be a match over the next two to three weeks. This involved blood work, X-rays, CT, and MRI scans, and a visit with a social worker.  

After Ian’s approval to be a donor, they were scheduled to have the surgeries about five weeks later.  However, suddenly, there was concern about Jessica’s gallbladder and bloodwork status. This led to debate if the transplant surgery would continue as planned. Fortunately, their surgeries successfully occurred on December 7, 2022. Ian was discharged on December 12, while Jessica was discharged on December 17. But they stayed close to the UHN hospital over the next couple of months for follow-up appointments as they recovered. They are now recovered but it has been a non-binary journey. Jessica says that it is a day-and-night difference in her health after the transplant. They are very appreciative of everyone’s support throughout their transplant journey.  

Kristian asked Jessica as to what prompted her to make her video journals which were later edited to make the film.

Jessica stated that when she was listed for the transplant, there was only so much information she could get from friends or hospital factsheets. She couldn’t find any videos of someone sharing their experience of the transplant evaluation process on any online social media platforms. No personal transplant journeys were posted. So, Jessica decided to make videos for herself and others. This was to help people understand what they were going through. Even though there were days when she was sick and did not feel like filming, she would film something and post it.

What had started as a series of video diaries, became a means of huge support for her and Ian. She has received plenty of great feedback and comments from others who were experiencing their medical journey. These became therapeutic for Jessica by establishing connections with them as they shared their journeys. She did not feel so alone. They also have had strangers reach out to them to tell them how much their videos had helped them.

Thank you, Jessica and Ian, for sharing your touching story!   

Participate in a Wellness Study!

Here’s a quick update on a research participation opportunity we mentioned back in our September edition which is now recruiting participants with additional chronic conditions including PSC!

EMPOWER is a 12-week program developed at the University of Alberta that offers online content, coaching and classes in breathing, meditation, tai chi and yoga, along with coping skills such as pacing, sleep hygiene and self-compassion for people living with chronic conditions. There are videos and talks by medical experts and group movement sessions.

Check out their recruitment video here:

You can learn more about the program and reach out to the research team by visiting https://empower-program.com/ or reaching out by email to empower@ualberta.ca.

Year End Fundraising Update!

Your Donations Were Doubled and They Added Up Fast!

Our community came through in a big way this December as so many of you made donations to PSC Partners Canada. Each of your donations was doubled thanks to three very generous donors and we totaled $36,775!

All of this money will be used to fund important research. A very big THANK YOU to all those who donated!


Profile of a PSC Parent & Caregiver

Article by: Matt Hodgson

For this issue of the Loon Duct, the Loon Team connected with the mother and caregiver of a young adult PSCer to tell the story of caregivers within our PSC patient community. As talking publicly about PSC is a very personal decision, we’re respecting the privacy of the PSCer by publishing an anonymized account. For the purposes of this article, we’ll refer to the mother as “Jane.”

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 last fall 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 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 complementary of PSC Partners, “I can’t say enough about PSC Partners. If it weren’t for them I don’t think we’d survive. We couldn’t have made it this far.”

Canadian PSCers in the News

Keep your eye out for an upcoming op-ed piece in the Globe & Mail later this month for an article by Canadian PSCer Stephanie Azzarello. Stephanie works as an art historian lecturer at the University of Toronto and is in liver failure and seeking a donor. You can follow her journey and watch for this article and more on her public Facebook page.

Photo Credit: Stephanie Azzarello needs a living liver donor Facebook Page

Here's a few excerpts from the soon-to-be published piece:

Some days, there’s nothing better than escaping into someone else’s mind. Mexican painter Freda Kahlo is known for her raw and confessional artworks, most of which gave a panoramic view into her thoughts, dreams, nightmares, fears and hopes.

As an art historian, I can appreciate Kahlo’s oil-on-canvas proclamations about the beauty and brutality of life, illness, and pain; I am especially drawn to one work in particular: What the Water Gave Me. In it, we see her legs submerged in a bathtub full of tiny floating images that represent key moments in her life, following a traffic accident as a young woman. This painting has become a metaphor for my present circumstances—and a reminder that even in dire situations, there can still be grace.

Liver disease has allowed me the time and space to slow down and take a rigorous personal inventory; to re-evaluate my views, ethics, ambitions and motivations. It has also shown me a path of service as I am now a passionate advocate for organ donation awareness, which includes liver disease education and living organ donation awareness.


PSC Peer Group Zoom Rooms & Events!

Join others folks from the PSC community for these supportive, helpful, fun virtual events. Space is limited. Registration required. Link to register below. The sessions are not recorded, and are intended as safe open forums.

All at 6:00pm-7:00pm MT (8pm EST)

Unless otherwise indicated, events are listed in Mountain Time

Monday, March 25, 2024

Embracing Diversity in PSC Webinar: Enhancing the Search for PSC Treatment for All

► Register Here

Tuesday, April 2, 2024

ZoomRoom: Those Living with Loss

Join those peers who are living with the loss of a loved one and carrying on the spirit in the PSC community.

► Register Here

Tuesday, April 16, 2024

ZoomRoom: Teens living with PSC & Post-Transplant (ages 13-18)

Join this virtual peer-to-peer support group to chat with others who truly understand the PSC journey.

► Register Here

Want to share your story? Email us! ContactUs@PSCPartners.ca
Watch the PSC Partners website, newsletter, and social media for updates.


PSC Partners Canada uses Facebook regularly to share news of interest to the Canadian PSC community. If you are not a Facebook user, the feed of postings is shared to a page on our website at pscpartners.ca. The Loon Duct is sent quarterly, so if you are wishing for more frequent contact, remember to follow us on Facebook, or check in periodically on the website.

Our mission is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease.

PSC Partners Seeking a Cure Canada
A Canadian registered charity affiliated with
PSC Partners Seeking a Cure