Living with a chronic condition like a rheumatic disease can be especially challenging for young people, not only physically but also mentally. It’s no surprise that 40% of youth diagnosed with a rheumatic disease experience symptoms of anxiety, depression, or panic disorders. However, a strong support system and connection with others who understand these struggles can make a world of difference.

One remarkable young leader in our community is making a tremendous impact in this area. Meet Ciara Mahaffy, a shining example of youth leadership and compassion. As a member of Cassie + Friends’ 2022 Youth Ambassador Program, Ciara has gone above and beyond to create spaces of support for youth living with rheumatic diseases.

Ciara’s efforts led to the founding of the University of Toronto’s Rheumatic Disease Organization, a unique initiative aimed at connecting students who live with similar conditions. The club isn’t just a community where students can meet others who truly understand their challenges—it’s also a source of tangible support. Ciara and her team have delivered care packages to students diagnosed with rheumatic diseases, offering a small but powerful gesture that reminds them they are not alone.

In Ciara’s words, “One recipient said they were shocked to discover that someone was offering a care package and a club for students with rheumatic diseases; they had never met anyone else with a similar condition or even heard of someone who knew about their disease.” For many, this connection has been transformative, providing a sense of belonging in a world that often feels isolating.

Since its founding, the Rheumatic Disease Organization has already delivered care packages to 8 students, and its membership continues to grow. Several members of the club have even signed up to help raise awareness and funds as part of Team Cassie + Friends in the Toronto Waterfront Marathon and 5km Charity Challenge on Saturday, October 19th, 2024.

Ciara’s incredible work is a reminder of the power of community, the importance of mental health support, and the impact one passionate leader can have in changing lives for the better.

A recipient with her care package!

Here’s what some of the recipients had to say about their care package:

“My care package was particularly useful this August when I completed the field portion of UofT’s Forensic Anthropology Field School. This is one of UofT’s physically intensive experiential learning courses, and whether I spent the day excavating in the field, carrying heavy equipment, or doing a hands and knees search, I always ended up in pain. I used many of my care package items, including hot/cold packs to help moderate the pain so that I was able to participate the next day. I am so grateful for Ciara and Cassie + Friends for providing us students with resources to help navigate our diverse range of coursework as we aim to achieve our desired careers.” – 3rd year undergraduate, Josie, Juvenile Idiopathic Arthritis

“Receiving the care package was a reminder that I’m not alone in managing life at U of T with a chronic illness. Items like sunscreen, joint pain relief, and support for hair loss made me feel truly seen and understood in ways that other support doesn’t always capture! It was clear the package came from someone who understands life with a rheumatic disease, and that sense of solidarity was really appreciated. Small gestures like this go a long way in making the challenges feel a little lighter.” – 3rd year undergraduate, Elyse, Lupus

“Near the end of summer, I was experiencing a flare-up whilst being sick in bed and quarantining. In that time, I was alone and in pain. However, the presence of this care package in my room was a significant aid and encouragement. Beyond just easing my symptoms, it reminded me that I was not actually alone and that a community of people my same age are also dealing with the same difficult experiences. I am thankful that this package gave me the opportunity to be connected with this community.” – 4th year undergraduate, Ankylosing Spondylitis

Looking to make a care package for someone in your life this #WorldMentalHealthDay? It’s a great way to show someone with a rheumatic disease that you really care! Ciara makes sure to consider a student’s age and diagnosis when putting together their care package. Here are a few of the items she would include for a student with Juvenile Arthritis taking weekly injections of methotrexate:

• Non-medical pain relief and Injection support supplies: cold gel, hot gel, a cooling compression glove, a hot/cold flexible gel ice pack, a portable first-aid kit, a shot-blocker, a fun frog ice pack, and super sour gummies for distraction purposes.
• Physio and school supplies: hand strengtheners, a yoga block, and wide-grip easy-to-hold pens.
• Hair and skin care for damage caused by methotrexate: Restorative Hair Mask, Bond Repair Serum, easy-to-hold scalp massager, and sunscreen.
• A book featuring a main character with Juvenile Arthritis: Cursed by Karol Ruth Silverstein.
• Gift Card for door-to-door transportation/food delivery during a flare: Uber/Uber Eats.
• Pick me up Gift Card: Tim Hortons.
• Supportive card!

Another tip from Ciara: Package the items in a washbag fitted with easy-to-hold zipper pulls and a wide-strapped fashionable tote bag. Accessible items can look trendy, too!

A sample care package and tote!

We asked Ciara about her hopes for the club and what keeps her going, and here’s what she shared:

“The transition to university can be tough for many students! Adding on a rheumatic disease full of sickness, injections, and medical appointments to this transition can become overwhelming for some students. The emotional burden of living with a rheumatic disease is already high. Dealing with a rheumatic disease while living away from your family or primary support system for the first time increases this emotional burden. It can have a severe impact on students.

One goal of the University of Toronto Rheumatic Disease Organization is to help relieve part of this emotional burden. I am so pleased that we are slowly fulfilling this goal each and every day. Through our Care Package initiative and connection events, we are making University of Toronto students with rheumatic diseases feel understood and cared for. The students know that they have a community they can count on to support them when they are in pain or sick, celebrate their wins and, above all, truly understand what they are going through.

I am so thankful for this community of students we are building at U of T. I have gotten to know some truly incredible people that I know I will stay connected with long after we graduate. I hope this will be the same for all of our club members! I can’t wait for the connection events we have planned for the year ahead. Did someone say craft night?!

I’ve also learned that, for myself, helping others is a greater emotional cure than any form of self-care. Seeing others thrive because of the work I have done with this club has been so uplifting. I can’t wait to see what every single University of Toronto student with a rheumatic disease goes on to do with their life. Their resilience has already helped bring them to this university, and I know that they have the capabilities to contribute important things to the world. In the meantime, the University of Toronto Rheumatic Disease Organization will be here to support them and remind them what strength they have.”

Ciara at a recent Cassie + Friends’ run!

Want to stay up-to-date with the University of Toronto Rheumatic Disease Organization? Make sure you follow them on Instagram. If you’re a student at U of T and want to get involved, reach out to Ciara at uoftrheumaticdisease@gmail.com. If you’re a student at another university and want to start your own Rheumatic Disease Club, send us an email at jessica@cassieandfriends.ca and we will help get you started!

Looking for other ways to connect with peers who share similar experiences with you? Our Youth Mentorship Program has you covered. Learn more by checking out our webpage and getting in touch with Jessica at jessica@cassieandfriends.ca. And make sure to check out our next virtual connection event, where we’re celebrating #NationalMentoringDay on October 27, 2024, at 3 PM ET / 12 PM PT. Learn more and sign up today by visiting this link!