A Discussion on Growing up a with Rheumatic Disease
Our virtual youth panel took place on July 16, 2020 and now it lives on our website so that all families in the juvenile arthritis and other rheumatic disease community can learn from our inspiring panelists! You’ll hear real stories from young adults about how rheumatic diseases affected them at school, sports, and with friends, and learn more about ways to help your child/teen cope with pain, treatments, and emotions.
This discussion is beneficial for parents, affected youth, grandparents/family members, healthcare professionals, educators, coaches and anyone who wants to learn more about what it’s like to be diagnosed with a rheumatic disease and navigate its treatments, symptoms, challenges and lessons.
Follow-up questions: We had so many great questions asked during the live event that we actually ran out of time! So we followed up with panelists Kelsey and Graeme to get you the answers. In this post-event interview, Kelsey and Graeme take a dive deep into pain management tips, their thoughts on telemedicine/virtual appointments, and juggling school and work with active arthritis. Read more here.
Panel Questions:
Don’t have time to watch the full video? No problem! Below you will find all the questions our panelists were asked with the appropriate time stamp.
Q: Who would you lean on for support throughout your diagnosis and what did they do that was helpful, and what things did you prefer they hadn’t done? (16:31)
Q: How were the ways you communicated with your teachers about your condition? (17:17)
Q: How did you manage telling your friends about your condition, and how did you deal with bullying and teasing? (18:39)
Q: How do you manage fatigue while attending school/class? (20:25)
Q: What tips do you have for participating in sports and exercise with a chronic disease? (21:48)
Q:When you’re not having the best mental health day, what do you do to make yourself feel better? (23:31)
Q: How did you manage your health after moving from pediatric care to adult care? How are you managing independently from your parents? (27:21)
Q: How are you managing your disease with the COVID-19 crisis, what strategies have you been using? (31:02)
Q: How has your rheumatic condition impacted your life, and what’s the biggest thing you’ve learned about yourself? (35:31)
Q: What advice would you offer to the parents of a child that has recently been diagnosed? (39:00)
Q: Any advice for kids starting their journey with a rheumatic disease? (41:39)
Q: How have you managed your chronic disease during school, with respect to getting access to accommodations and using the accessibility centre? (43:27)
Q: Using an Individual Program Plan (IPP) and an Individualized Education Plan (IEP)? (44:40)
Q: What would you add to your current care plan to make it easier? (45:41)
Q: What has been your experience taking steroid medication? (47:51)
Q: How do you manage your swollen joints when studying at school? (49:02)
Q: How do you manage swollen joints while being active? (50:09)
Q: Tips for taking Methotrexate and dealing with the side effects (54:20)
Q: Have you had any mental health support experience? (56:01)
Q: How do you manage driving with arthritis? (58:34)
Q: How do you get over your needlephobia? (59:51)
Q: When did you start going to appointments without your parents? (1:01:52)
Q: How is traveling to doctors appointments with JIA? (1:04:00)
Q: The new normal? (1:05:39)
Our panelists:
Each panelist has a powerful story to tell about perseverance, finding balance, and creating their own definition of success – all in the face of chronic disease.
Kelsey Chomistek, Moderator
Kelsey is 25 years old and was diagnosed with juvenile idiopathic arthritis at age 14. She is currently completing her Master’s of Science in Medical Science at the University of Calgary while starting her first year of medical school. Kelsey is pursuing a career in pediatric rheumatology and is the co-founder and national Teen Arthritis and Autoinflammatory Group Leader (TAG).
Chloe Chow, Panelist
Chloe is 21 years old and was diagnosed with Systematic Lupus Erythematosus (SLE) in 2009. She currently studies at the Sauder School of Business at the University of British Columbia (UBC) and will be graduating in December 2020. She enjoys staying active through sports and the gym. During her first year at UBC, Chloe competed on the UBC Synchronized Swimming Team and was able to explore her passion for both dance and swimming. She enjoys giving back to her community by volunteering with the Vancouver General Hospital & UBC Youth Leadership Programs.
Trish Peters, Panelist
Trish is a third-year student at the University of Ontario, Institute of Technology (UOIT) where she studies commerce and majors in finance. She was diagnosed in 2011 after complaining about growing pains for a year. Trish enjoys being active and finds that it helps her joints. She played rugby for 6 years and enjoyed the competitive atmosphere. Now, she’s a self-described “gym junkie” (although on a break due to COVID-19). Trish founded the Women in Business Club at UOIT and plan to increase her presence in the corporate world.
Manahil Shariff, Panelist
Manahil is 19 years old and was diagnosed with juvenile rheumatoid arthritis in 2016. She is a third-year science student at the University of Alberta where she is working on a research project and also serving as the director of education with a student group called Women Empowering Women. Manahil volunteers as a COVID-19 screener and baby cuddler volunteer (pre-COVID-19) in the neonatal unit. In her free time, she bullet-journals, paints, and crochets.
Graeme Zinck, Panelist
Graeme lives in Charlottetown, PEI and was diagnosed with juvenile idiopathic arthritis and uveitis at three years old. He has a Bachelor of Computer Science degree and is pursuing his Master’s at the University of Waterloo beginning this September. Graeme is also a trained youth mentor within the iPeer to Peer program. In his spare time, you’ll find him writing music (including a song about juvenile arthritis), singing show tunes, and making delicious homemade yogurt.
