Episode 83: Improving Communication Throughout the JIA Journey

Have you or your family been affected by juvenile arthritis? On this episode, Tiffany is joined by Rochelle Lentini, CEO and President of Purple Playas Foundation, who have united with other specialists and families to identify additional tips to improve communication.

During this episode, Rochelle and Tiffany discuss this new collaboration project between AiArthritis and Purple Playas Foundation, along with Rheumatology Nurses Society and Novartis, to create discussion aids and question guidance to help families improve communication with all the professionals they meet along the way. 

Tiffany and Rochelle also provide suggestions that can offer some hope to families struggling to get answers. If you would like to share your story, insights, or recommendations to help us create these new tools to help those navigating through their Juvenile Arthritis journey, please fill sign up using our Google form at www.aiarthritis.org/jiacommunication

Episode Highlights: 

• Rochelle shares the difficult, frustrating, and lengthy diagnosis process for her son’s Juvenile Arthritis 
• Common symptoms to look out for with Juvenile Arthritis 
• What types of doctors you might see along the diagnosis process
• Importance of symptom tracking with your children to provide as much details and data to your physician as possible
• Tips on best questions to ask your doctor when seeking a diagnosis
• How to improve patient-doctor communication for better understanding on both sides
• How to communicate with your child and give them a voice when interacting with their doctor
• Purple Playas and AiArthritis are coming together to collaborate on new resource tools for parents and children seeking a Juvenile Arthritis diagnosis
• How to get involved in the new resource tool and share your insights and recommendations for improvements 

Thank you to Novartis for supporting the Journey Improvement Aids (JIAs) for Juvenile Idiopathic Arthritis (JIA) - Detection, Diagnosis, Treatment project. 

 

Our Co-Hosts:

• Tiffany is the CEO of the International Foundation for AiArthritis, and uses her professional expertise in mind-mapping and problem-solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.

Connect with Tiffany:

• Facebook: @TiffanyAiArthritis
• Twitter: @TiffWRobertson
• LinkedIn: @TiffanyWestrichRobertson

• Rochelle Lentini, M.Ed. is the CEO/President of the Purple Playas Foundation and an early childhood education national consultant/trainer. She has RA and her son has juvenile arthritis, hypogammaglobulinemia, and other overlapping conditions. Rochelle has over 40 years of experience working with children with disabilities and their families and is a nationally recognized speaker. Her passions include family-centered support, inclusion, and inspiring hope for kids with chronic illnesses. 

Connect with Rochelle:

•     Facebook : @PurplePlayas

 

 

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AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!