Sun Protection

Whether newly diagnosed or well into your JM journey, you’ve probably heard that sun and ultraviolet light can be a factor in triggering disease activity. Unfortunately, the harmful UV rays aren’t limited to tropical regions or only the summer months. Even on a cloudy day or in the winter months, sun protection plays a crucial role in managing JM.

However, with summer underway, this important topic is on our minds. Our families and patients often wonder the best ways to protect themselves or their children during the most UV-intense months. Therefore, Cure JM is honored to present an, “Ask the Doc,” Town Hall on Sun Protection Tips and Tricks for Summer. In this session, Shelia Angeles-Han, MD, MSc, of Cincinnati Children’s Hospital (a member of the Cure JM Clinical Care Network) and Kalyani Marathe, MD, MPH Division Director of Dermatology at Cincinnati Children’s Hospital, share the importance of sun protection for JM patients.

Watch Dr. Marathe and Dr. Angeles-Han to learn more about:

· Choosing and applying the best sunscreen for all skin colors

· Choosing the proper sun protective clothing

· Why sunscreen and sun-protective clothing is important for JM patients

· Considering sunscreen as a form of medicine

Additionally, Dr. Susan Kim, MD, MMSc, Associate Professor, Associate Clinical Professor of Pediatrics at the University of California, San Francisco Department of Pediatrics, and Dr. Adam I. Schiffenbauer, MD, Staff Clinician, Environmental Autoimmunity Group, National Institute of Environmental Health Sciences at National Institutes of Health previously presented detailed information to Cure JM families about ultraviolet light, sunscreen, best practices for protecting patients, and the latest approaches in managing skin disease.

Dr. Kim and Dr. Schiffenbauer present useful information regarding:

· Ultraviolet and artificial light as it pertains to JM patients

· The UV index and how to limit one’s exposure

· Choosing and applying sunscreens during different seasons

· Treatments for skin in JM patients

These presentations provide valuable information to get JM patients through not only the summer months, but year-round.

Ways to help your kids and yourself cope living with JM

Cure JM Mental Health Coordinator, Suzanne Edison discusses ways to help your kids and yourself cope living with JM. Learn about emotional and behavioral challenges that often come with chronic diseases like juvenile myositis and ways to help patients and caregivers cope.

Juvenile dermatomyositis patient Natalia with Dr. Liebling, JDM researcher

Research Volunteers and Assistance Needed

Help researchers find the cause and a cure for juvenile myositis by volunteering for these important studies.

Walking Strong, Empowered by unity

Walking Strong – Empowered by Unity

Like other teens new to the JM journey, Catie Beth Caldwell and Madi Cook were two individuals who felt alone at the beginning of their journeys. Catie Beth was diagnosed just before the Covid-19 pandemic took hold of the world as we knew it. With this came feelings of isolation and loneliness. These emotions were commonplace for many teens but were only compounded by teens new to a rare disease diagnosis. These first years of the “new normal” were difficult to navigate.

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