Author: Zoya Jiwa, YLC Program Designer and founder of As We Are Style – a blog about facing health challenges with courage and style.

Last weekend, Cassie + Friends’ Youth Leadership Committee got together for our first team retreat on a surprisingly sunny afternoon (thank you, Vancouver!) with a lot of excitement and a BIG box of LEGO!

Our goal was to brainstorm new teen and young adult events and programs for the year ahead (Got ideas? You can provide your input here!), but first we spent some time sharing our own experiences growing up with rheumatic disease.

There were highs – like meeting new friends at annual camps and Cassie and Friends’ Family Days – but there were also some real lows: disruptive, confusing symptoms, medication side effects, and the emotional toll (on top of the regular rollercoaster of teenage emotions) that comes along with pain and health challenges. All of us admitted that, at some point, we had to give up some of the activities we loved most as kids: the sports that lent us a second family and community; the art classes that brought us calm and creativity; or even time spent with friends when we were in a flare up and having a rough day, week, or month.

Heavy stuff, right?

That’s when we dumped an equally heavy box of colourful LEGO pieces onto the table.

We spent the next hour discussing some of the major transitional life periods teens experience and what kind of resources there are – or aren’t – to help youth who live with rheumatic diseases thrive through it all.

Using LEGO, we created visual images of what life can look like with rheumatic disease during some of a youth’s most major transitional stages:

• Beginning or graduating from high school
• Transitioning from pediatric to adult health care
• Preparing to enter the workforce
• Managing daily life with pain, symptoms, and medications

We literally built, tore apart, and rebuilt what programs and resources are needed to meaningfully intervene and, dare I say, even add some fun and colour to the current patient experience.

By the end of this exercise, we had explored:

• Proactive and integrated approaches to healthcare
• Comprehensive services that would empower youth to manage their health independently
• A list of events and initiatives the YLC plans to take action on throughout the next year

Stay tuned for upcoming YLC events, and in the meantime, be sure to sign up for the Youth Leader Network mailing list!

About the Youth Leader Committee:

Having faced their own health challenges and emerged as strong advocates, the Youth Leadership Committee (YLC) is group of young adults who are actively committed to Cassie and Friends’ (C+F) mission of transforming lives within the Juvenile Arthritis and broader rheumatic disease community. Moving forward, the YLC will begin hosting their own educational, social and fundraising events for youth ages 12-25, providing a platform for young people living with rheumatic diseases to connect, support one another, and gain confidence in managing their health conditions.