Mackenzie Hazlewood: Navigating challenges and embracing new goals as a teenager living with PSC
July 1, 2022
Some PSC patients say that when they learned of their PSC diagnosis, it changed the way they thought about their lives. Some describe it as re-evaluating what was important to them, and others mention that they were forced to consider aspects of life that they didn’t expect to deal with until they were older. For pediatric patients, this is especially true.
Itching was Mackenzie Hazlewood’s first sign that something was happening, but her symptoms were initially assumed to be an allergic reaction. Additional symptoms led to further testing, including a biopsy on the second day of grade 11. Mackenzie lightened her school workload to take time to cope with her PSC diagnosis.
Like many of us, Mackenzie first did a deep dive searching the internet for information. She was frustrated to learn that she, as a 16-year-old girl, had a rare disease that most commonly affects men over 40. Sometimes fellow students assumed that the time she needed to take away from school to handle PSC symptoms was “a perk of being sick.”
In Mackenzie’s words, her doctor helped her “mellow out,” and to really understand the statistics online that can be alarming to read without more context.
Many PSCers cut out alcohol for several reasons. As a teenager or young adult, it can be particularly challenging to be surrounded by it at social events. There are different ways to navigate those situations like non-alcoholic drinks that are becoming more available, and how to politely decline as well. This is the kind of honest discussion that PSCers might not have with family or friends, and all the more it’s a reminder of why it can help to connect with other PSC patients who can relate.
Access to specialist care across Canada can vary widely. In Edmonton, as a pediatric patient, Mackenzie was given priority and felt there was more of a sense of urgency to figure out the source of her symptoms. As she has transitioned to adult care, she finds there are longer wait times, as well as longer gaps between appointments.
One of the most noticeable differences Mackenzie has noticed as she transitioned from pediatric to adult care, is that she has become more of an advocate for herself, rather than relying on her parents to speak for her. Advice for Mackenzie and any age patient is that if you have people in your life who can accompany you to appointments or help to be advocates on your behalf, invite them to be there. We can all use as much support as possible.
Mackenzie’s has advice for other patients under 18 who are facing a PSC diagnosis. “It’s okay to be angry and feel that this is a bad deal that I’ve been handed. But don’t let it ruin everything you have planned for yourself. Don’t rush ahead and make your disease everything about you. You can still have your personal goals. PSC comes with you, and you’ll fit it into your life. Don’t mourn the ‘normal you’. You get to know a new version of yourself”.
Mackenzie Hazlewood shared her story with PSC Partners Canada volunteer writer Virve Aljas.
