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

· Treatments for skin in JM patients

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

Balancing Work and Caregiving: Strategies for Working Parents of Children with Juvenile Myositis

Balancing the demands of a career with the responsibilities of caregiving is a challenging task for any parent. For those with a child diagnosed with juvenile myositis (JM), a rare autoimmune disease affecting children, the challenge is heightened. Juggling work commitments while providing the necessary care and support for a child with JM can be taxing. In this article, we hope to provide you with a few effective strategies and insights to help working parents navigate this delicate balance.

What is Juvenile Myositis?

Juvenile myositis, including juvenile dermatomyositis and juvenile polymyositis, is a group of rare and life-threatening autoimmune diseases, in which the body’s immune system attacks its own cells and tissues.

Traveling with JM

Planning a trip or vacation can be challenging, especially when you have a child with juvenile myositis. With spring break and summer break just around the corner, the pressure might be even greater. However, at Cure JM, we want to help ensure that you and your child can enjoy all the delights of a vacation with minimal stress.

Join Cure JM

Membership is free and we’ll connect you with a network of support, encouragement, and resources.