“As a young adult with JIA I have experienced firsthand just how much goes on at this age. School, work, relationships, newfound independence, transition… I wanted to create resources with short pieces of patient-driven advice to help others like me navigate the constant changes of life with rheumatic disease.”

Who is Alejandra Van Dusen? 

Alejandra is a student at the University of Regina, a lifeguard, swim instructor, an active volunteer in her community and was diagnosed with Juvenile Arthritis at age 2. In May, she completed the C+F Future Leaders Program (formerly known as the Youth Ambassadors Program) as a member of our first cohort. 

Throughout the program year, Alejandra workshopped her project – Tales from Transition – which aimed to share stories of youth and young adults navigating all areas of entering adulthood with a rheumatic disease. Alejandra collected stories from her peers related to travel, work, post-secondary education, physical activity and more and envisioned edits to the C+F Transition and Beyond resource page that would allow the community to both access and related to these shared experiences. At the end of the program, Alejandra presented her work to panel of judges at the C+F Future Leaders Showcase where she was named 2023-24 C+F Youth Ambassador of the Year!

We caught up with Alejandra to take a deep dive into her project and experience as a leader in the community.

Q: Can you tell us about your project, Tales From Transition?

A: My goal was to collect and create multi-media patient-driven resources for young adults living with rheumatic diseases to be housed on the Cassie and Friends Youth Transitions Webpage. Following a literature review and environmental scan, I identified key topics to be covered: relationships, work, travel, post-secondary education, healthcare, personal wellness, and mental health. 

Featuring short and specific content was intentional as I wanted young people to access and watch the content with ease. Moreover, I knew I wanted the videos centralized in one location to alleviate the burden of sourcing information from the vast internet. 

Another goal of my project was to platform diverse voices within our community. Sharing diverse stories and advice provides opportunities for connection, learning, and support. While every story is unique, I am certain that they will resonate with many people in our community. 

Q: Wow what an incredible idea! What inspired your project?

A: My project was inspired by my involvement with the Patient and Community Engagement in Research (PaCER) project. During this project, our team conducted research on JIA transition from pediatric to adult care. One of our identified themes was the increased need for resources as well as the importance of social support. While attending focus groups, I gleaned that sharing our stories can provide social and informational support to others, while also conferring psychosocial benefits to the storyteller. 

Additionally, as a young adult with JIA I have experienced firsthand just how much goes on at this age. School, work, relationships, newfound independence, transition… etc. I wanted to add to the current body of resources out there for these topics with short pieces of patient-driven advice. 

My past involvement in our community also inspired this project. When working with Take a Pain Check and attending C&F youth events, I gained a great appreciation and fascination for the mosaic of stories in our community. I wanted to platform diverse stories. 

Q: Over the course of the year, how did your project develop, what happened?

A: I gained insight from the  cohort workshops and the meetings with my coach who provided advice and guidance for my project. During my project, I joined the Cassie and Friends Youth Transitions Working Group. 

Once I identified content themes, I contacted personal connections – many of who are in the Future Leaders Program or have connected with prior through Cassie + Friends events. I provided them with a video topic, and provided some reference resources i.e. research, articles, etc. 

Once I received the videos, they were shared on the Cassie + Friends website, I was able to create a resource collection that includes:

In addition to resource collection, I supported the Cassie and Friends Transition and post event Beyond Youth Rheum session. My content was used to advertise the Cassie and Friends Transition and Beyond Webinar.

Q: How would you describe your experience in the program? How have you grown from it?

A:  I would describe my experience in the program as highly empowering. Much like my fellow youth ambassadors, I entered this program with ideas and passion. This program created an environment for each of our ideas and passions to develop into tangible goals. Throughout the program, we got to participate in insightful project planning and evaluation workshops. These learning experiences provided us with new knowledge and skills to serve us in both our projects, and future endeavors. 

In addition to education and coaching, this program also provided me with one of the most valuable resources of all: a community. Monthly meetings allowed our cohort to stay in touch, share updates, and trade our unique perspectives with one another. I felt very encouraged and supported by my fellow ambassadors! And, I have them to thank for providing their wisdom in my young adult resources. 

Q: After doing so much research and work, what’s something you’d like to share with youth who are about to transition?

A:  Be inquisitive! During this exciting period of your life, there are bound to be many things that you have questions about. These questions may be related to your health, relationships, school, travel, work and more. Do not be afraid to ask people in your support network these big questions. Asking questions will provide you with ample information, advice, and context for you to confidently navigate young adulthood.

Q: What’s next for you?

A: This fall, I am completing my last semester of my degree and will use this semester to complete an internship in a Corporate Integrated Health, Safety, and Wellness branch. I am really excited to learn more about occupational health and safety.

I am also interested in accessibility and inclusion. I have been involved with the Rick Hansen Foundation by attending their youth leadership summit in 2017, writing a blog, and speaking at a panel in the Global Disability Summit in 2022. 

I plan on pursuing graduate or professional studies after my first degree. I am not sure what I will study but I am interested in social health. 

We wanted to wrap this interview up with one final question that could help youth in our community transitioning or about to transition to adult care which is what are your top 3 tips for successfully navigating all aspects of transition? 

A:

  1. Make sure you have a strong support system: A lot is changing at this age and it’s important to be able to talk about it and connect with others experiencing similar challenges. Whether this is friends, families, or a community like Cassie + Friends, it’s really helpful and comforting to hear ideas from other people, talk things out and just know that you’re not alone!
  2. Be kind to yourself: School, work, friendships, relationships, travel etc, it can all be overwhelming. Learn to say “no” when you need to and don’t beat yourself up when you can’t do everything. It’s okay to stop and take a breath sometimes.
  3. Don’t be afraid to advocate for yourself: YOU are the only person who knows what you need and there is support available if you ask for it. Be open and honest with your doctor, find out what student services can help with, and talk to your employer about your workplace needs. As hard as it can be to learn to speak up for yourself, it gets easier overtime and you begin to realize that most people are happy to help!

To learn more about the Future Leaders Program and our new Cohort visit cassieandfriends.ca/yln.