teens + young adults
At Cassie + Friends, we are here to support you as a young adult living with rheumatic disease! Whether you are transitioning from pediatric to adult care, attending post-secondary education and/or in the workplace, we’ve gather extensive resources and information to manage help you manage your arthritis and feel supported. Below, you’ll find our upcoming events, past Teen Transitions and Youth Panel webinars, youth stories and excellent resources from our friends at the Arthritis Society, Women’s College Hospital, About Kids Health and the Hospital for Sick Children.
teen transitions webinar
The transition from pediatric to adult care can be a big life change when it comes to managing your rheumatic disease. From making your own appointments, attending a new clinic, and navigating treatment/medication all while attending post-secondary school or starting a job, transitioning to adult care can feel overwhelming.
This expert-led session held in November 2020 is for anyone interested in learning more about what’s involved in the transition from pediatric to adult care and how you and your medical team can work together to ensure a smooth and successful process.
From this session you will:
+ Hear directly from parents and young adults about their real-life transition experiences
+ Gain insight from an expert at SickKids about how you and your child/teen will be prepared to graduate from pediatric care
+ Meet the JIA Transition Clinic team from Women’s College Hospital who will share the in and outs of what happens at clinic and how they will support you
0:00 Welcome from Cassie + Friends Executive Director, Jennifer Wilson
4:35 Introduction of Patient Speaker, Morgan Harris
5:11 Morgan Harris JIA Patient Speaker
13:30 Morgans tips for teens
16:05 Introduction Speaker, Pediatric Rheumatologist, Dr. Lynn Spiegel (SickKids Hospital)
16:40 Dr. Lynn Spiegel Crossing from Pediatric to Adult Health Care
18:05 Importance of Transition Planning
18:30 How it works at SickKids
19:50 Sign up for MyChart
21:44 Transition and Social Media
22:25 Teens Taking Charge
23:34 iPeer2Peer Program (Skype based mentorship program)
25: 14 Readiness for Adult CarE in Rheumatology (RACER Program)
26:14 Healthcare Teams Responsibilities for Transition
26:39 Teens Responsibilities
29:10 Introduction to JIA Transitions Clinic Team -Toronto, ON (Dr. Evelyn Rozenblyum, Pediatric Rheumatologist, Dr. Natasha Gakhal, Danielle McCormack, Physiotherapist)
31:15 Objectives of the JIA Transition Clinic
35:08 Team Members from JIA Transitions Clinic
36:51 Philosophy of JIA Transitions Clinic
37:54 Differences between pediatric and adult care
39:06 Virtual Care
39:33 Who is the clinic for and who is on the clinic team?
40:05 ACPac Physiotherapist (Danielle McCormack)
41:34 Dr. Natasha Gakhal
41:53 Administrative Assistant, Social Worker
43:22 Accessing Community Resources
44:10 Navigating the Adult System
45:27 Patient Goals
46:43 Clinic Contact Number
47:45 Summary + Closing
50:00 Question + Answer Period
50:07 Do I have to move services? I am happy with my care now.
51:36 What were your biggest concerns as a parent? How did you deal with the transition for Morgan?
55:40 Are there rules around parents attending the transition clinic?
58:14 How can I be sure that my child will share the information they need to share and get the information they need to get?
1:00:24 Who should bring transition up process at the beginning? The parent or the doctor?
1:03:00 What kind of support can you offer those who are entering university and what support they can be accessing?
1:04:53 Can you access the JIA Transitions Clinic (Toronto, ON) if you are coming from a different province?
1:07:10 Have you had any experience or tips for those who are doing a semester abroad?
1:09:48 How can I build this new relationship with my new transition clinic team? What was it like to build this new relationship?
1:12:08 What if the relationship with your new clinic team is not going as planned?
1:14:50 My daughter is 16 years old and her rheumatologist is retiring. Should my daughter begin transition early or should she become a patient of the new pediatric rheumatologist?
1:16:40 Have you noticed any differences between females and males in the transitions process?
1:21:20 What changes in healthcare coverages happen with the transition to adult care?
1:24:06 I am 25 now, can I stay with the JIA Transitions Clinic?
1:26:37 Closing Remarks from Jennifer Wilson
panelists
Dr. Lynn R. Spiegel MD, FRCPC
Lynn Spiegel is a pediatric rheumatologist at the Hospital for Sick Children in Toronto, an Associate Professor at the University of Toronto, and a fellow of the Royal College of Physicians and Surgeons of Canada. Dr. Spiegel has been involved in local, national and international research to develop programs and tools to support youth in their transition from pediatric to adult health care system. She has just developed an instrument to measure Transition Readiness in teens and young adults with JIA.
Dr. Natasha Gakhal, Dr. Evelyn Rozenblyum, Danielle McCormack – Clinic Team
Pediatric Rheumatologists Dr. Natasha Gakhalp and Dr. Evelyn Rozenblyum, alongside physiotherapist Danielle McCormack, co-lead a transition clinic at Women’s College Hospital in Toronto for young people living with juvenile idiopathic arthritis (JIA). At their clinic, they jointly see clients between the ages of 17 and 25 who are in the in-between stages of pediatric and adult care.
Morgan Harris, Patient Speaker
Morgan Harris was diagnosed with JIA when she was eight. Her transition from pediatric to adult care made her a bit scared as she turned 18 and moved from a lifetime of caring, nurturing childhood doctors into the unknown. She had two doctors and multiple nurses who she knew cared about her and her health and she was afraid that she may not find a doctor in adult care that showed that same amount of concern for her health and well-being. In this session, you’ll hear more about her experience and learn tips for making the move.
virtual youth panel
Our first ever virtual youth panel took place on July 16, 2020! 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!
panelists
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.
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.
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.
from the blog
Self-care, self-injections, and other self-management tips from our youth panelists.
The Virtual Youth Panel event is now available for viewing on Youtube and IGTV. You'll find timestamps of the video on Youtube to direct you to the questions/answers you'll want to hear the most. This [...]
Mental Health Week 2020: Alison’s journey with mental health and arthritis
Alison Legge is a member of the Cassie + Friends Youth Leader Committee. She spoke at Cassie + Friends Family Day 2016 as a youth champion, speaking about the impact chronic disease has had on [...]
useful links
The transition from pediatric to adult arthritis care
Important considerations to think about before and during the transition from pediatric to adult rheumatology care.
Moving On: Higher Education Information from SickKids Staff
Find tips for further education, examples of accommodations and how to access them, and information on transitioning from high school to post-secondary education.
Teens Taking Charge:
Managing JIA Online Program provides teens with information on different types of JIA, managing symptoms, and coping with JIA management now and in the future.
5 Tips for Post- Secondary Success from the Arthritis Society
