This four-part webinar series is designed to help parents understand lupus and how to care for a child or teen with the disease. Parents and children will learn how to work together to manage symptoms, maintain a healthy lifestyle, and successfully transition to adulthood.Register for Part 3
Part 3: Preparing for Life as a Young Adult
February 10, 2021 from 7:30-8:45 pm
This webinar will focus on successfully transitioning from pediatric to adult health care and preparing for the changes ahead, including college, career, dating, family planning, or whatever the future holds. The suggested audience is adolescents with lupus aged 16 and older and parents or guardians of adolescents with lupus.
The webinar will feature an overview from Joyce Chang, MD, MSCE, a Rheumatologist in the Division of Rheumatology and the Lupus Integrated Nephritis Clinic at Children's Hospital of Philadelphia followed by a panel discussion with Dr. Chang, a mental health expert, a parent, and young adults with lupus.
Part 1: What to Expect
This webinar is designed for parent(s)/guardians of newly diagnosed children or teens with lupus or those needing more information. The webinar will feature an overview of lupus with Jon (Sandy) Burnham, MD, MSCE, of the Children's Hospital of Philadelphia and a panel discussion that includes Dr. Burnham, a psychologist and parents of children with lupus.
- Overview of lupus
- Treatments and side effects
- Working with your child to take medications consistently
- Understanding doctor’s visits
- How to help you and your child cope with the diagnosis
Thank you to our panelists!
Jon (Sandy) Burnham, MD, MSCE
Dr. Burnham is an Associate Professor of Pediatrics in the Division of Rheumatology at The Children’s Hospital of Philadelphia (CHOP) and the University of Pennsylvania School of Medicine. He currently is the Clinical Director and Director of Quality and Patient Safety in the Division of Rheumatology. He is the Director of the CHOP Lupus Program and Co-Director of the Lupus Integrated Nephritis Clinic.
Dr. Burnham is actively involved in quality improvement initiatives at CHOP and nationally, and studies care delivery in children with juvenile idiopathic arthritis and lupus. He has worked collaboratively to develop clinical pathways to diagnose, treat Kawasaki disease and MIS-C, and prevent acute adrenal insufficiency in children treated with chronic steroids. His work to operationalize “treat to target” in juvenile idiopathic arthritis served as the model for implementation in the Pediatric Rheumatology Care & Outcomes Improvement Network (PR-COIN) at sites across the US and Canada. He is now working to develop and implement the pediatric lupus care index, a composite tool to measure the quality of care with a focus on outcome measurement and comorbidity assessment and prevention.
He is the CHOP site PI of PR-COIN and serves as the co-chair of the PR-COIN Outcomes Committee. In addition to internal funding, he has received funding from the National Institutes of Health and the Rheumatology Research Foundation and is the recipient of the 2018 CHOP Master Clinician Award.
Christina M. Rouse, PsyD
Dr. Rouse is a pediatric psychologist in the Division of Urology and Pediatric Health and Behavior Program at Children’s Hospital of Philadelphia. Dr. Rouse completed her fellowship in General Pediatric Psychology at Nationwide Children’s Hospital and her internship in Child and Adolescent Psychology at the University of Rochester Medical Center. Dr. Rouse is the psychologist at CHOP's Lupus Integrated Nephritis Clinic.
Angela is a parent from the Philadelphia area. Her daughter was diagnosed with Lupus Nephritis at the age of 8 and will turn 17 in October. After enduring an aggressive treatment plan upfront, Angela and her family are fortunate that her daughter has been in good health ever since.
Rodney's son Parker was diagnosed with Lupus in 2007 at age 14. Parker is 27 now. As a parent, Rodney can attest that it is heartbreaking at times to see his son struggle with this disease. On the other hand, Rodney says, Parker refuses to be defined by Lupus and Rodney's job as a parent is to support his son in anyway possible.
Linda's daughter Alexa was diagnosed with SLE at age 13 and is now 24. Her struggle with the disease has been long and difficult, including a kidney transplant, a virus called CMV, and Alexa was even told she may never walk again. Alexa's kidney lasted over 5 years and there were many hospitalizations and challenges in that time period. However, Alexa has been on dialysis for 2 months and is awaiting evaluation for a new kidney.
Part 2: Digging into the Details
This webinar is designed for parent(s)/guardians of children or teens diagnosed with lupus or those needing more information. The webinar will feature an in-depth look at lupus after the shock of the initial diagnosis with Kelly Rouster-Stevens, Md, PharmD pediatric rheumatologist from Children’s Healthcare of Atlanta and a panel discussion that includes Dr. Rouster-Stevens, Andrea Knight MD, MSCE at Children’s Hospital of Philadelphia, and parents of children with lupus.
- Recognizing and preventing a flare
- Infection Prevention
- What does this new normal look like
- Importance of medications
Thank you to our panelists!
Kelly Rouster-Stevens, MD, Pharm D
Dr. Kelly Rouster-Stevens, MD, PharmD is a Pediatric Rheumatology Specialist at Children’s Healthcare of Atlanta and has over 20 years of experience in the medical field. She graduated from University of Cincinnati College of Medicine Medical School in 2000. Dr. Rouster-Stevens is the Pediatric Rheumatology Fellowship Program Director, Pediatric Rheumatology, Emory University and Associate Professor of Pediatrics, Emory University. Dr. Stevens is also a member of the Lupus Foundation of America, Georgia Chapter Medical Advisory Board.
Andrea Knight, MD, MSCE
Andrea Knight, MD, MSCE is an affiliate member at the Center for Pediatric Clinical Effectiveness (CPCE) and PolicyLab at The Children’s Hospital of Philadelphia (CHOP), an Assistant Professor of Pediatrics at the University of Toronto and an Associate Scientist at the Hospital for Sick Children Research Institute. Dr. Knight obtained her undergraduate degree from the University of Toronto and medical degree from the College of Physicians and Surgeons of Columbia University in New York City. She completed residency in pediatrics and fellowship in pediatric rheumatology at CHOP, and earned her Master of Science in Clinical Epidemiology (MSCE) from the University of Pennsylvania.
Dr. Knight's research focuses on improving mental health for children and adolescents with systemic lupus erythematosus (SLE) by investigating ways to enhance identification and treatment of youth with SLE affected by depression and anxiety. She is also interested more broadly in psychosocial and patient-oriented outcomes, healthcare disparities and utilization in youth with SLE and other chronic rheumatic disease. Dr. Knight has led studies investigating depression and anxiety in youth with SLE, as well as a project examining the national inpatient healthcare burden on pediatric SLE patients. She currently holds membership in the American Medical Association, the American Academy of Pediatrics, and the Childhood Arthritis and Rheumatology Research Alliance, among other organizations.
Shannon is the mother of a 14-year old daughter with lupus nephritis. Abbie was diagnosed with SLE at the age of 11, so the family has been dealing with the impacts of the disease for three years, giving them some early experience with the challenges of management. She is happy to share their experiences and offer any answers she can to families grappling with questions involving their children with lupus.
Aisha Amin is a loving compassionate yet assertive human being. Her greatest accomplishments are being a mother, grandmother, friend, and trusted confidant. Her daughter was diagnosed with SLE Lupus at age 14 and shortly after that she went into service at Children’s Hospital of Philadelphia (CHOP) on the Parents Advisory Board. While on this journey with her daughter, she has learned the value and importance of a medical team whose core values and beliefs are patient AND family centered care. As a parent she empowered her child to ask questions, make informed decisions and to remember she is not alone. There is a higher power that is guiding her, and that power is not her mom. Aisha is a lifelong learner as well.
Jennifer Mearkle is mother to 13-year-old Lizzie who was diagnosed with SLE Lupus almost 2 years ago. Jennifer is Co-facilitator of the Lupus Parent Project, a group providing peer-to-peer support for parents of adolescents and young adults living with lupus.