Support and guidance for your journey

A diagnosis of juvenile myositis or another rare autoimmune disease can feel overwhelming, but you never have to walk this path alone. Here you will find helpful tools, IEP resources for schools, guides for teachers, and community links designed for patients, teens, and caregivers alike.

Questions You May Have About Myositis

Whether you are a parent seeking educational accommodations, an educator looking for classroom strategies, or a teen navigating everyday life with juvenile myositis, explore answers and guidance below to help you feel informed, empowered, and supported.

What is myositis?

Myositis is a group of rare diseases that cause inflammation, often affecting the muscles and sometimes the skin, lungs, and other parts of the body. There are several types of myositis, and symptoms can vary greatly from person to person. Juvenile myositis affects children and includes juvenile dermatomyositis (JDM).

What types of myositis are there?

There are several types of myositis, including dermatomyositis (DM), juvenile dermatomyositis (JDM), polymyositis (PM), inclusion body myositis (IBM), immune-mediated necrotizing myopathy (IMNM), and antisynthetase syndrome. Each type can affect people differently, and symptoms, treatments, and disease progression can vary.

What symptoms can myositis cause?

Myositis can affect each person differently. Symptoms may include muscle weakness, fatigue, pain, skin rashes, difficulty climbing stairs or getting up from the floor, trouble swallowing, and in some types, lung involvement. Symptoms can also change over time, and not everyone will experience the same symptoms.

Why can someone with myositis seem fine one day and struggle the next?

Myositis can be unpredictable. Muscle weakness, fatigue, pain, and other symptoms may vary from day to day or even throughout the same day. Someone may be able to do an activity one day and need help, rest, or a mobility aid another day. Looking well does not always mean feeling well, and changing abilities do not make someone’s symptoms any less real.

What school accommodations may help a student with JDM?

Every student is different, but helpful accommodations may include extra time between classes, elevator access, rest breaks, modified physical education, help with note-taking or typing, an accessible locker, extra sets of textbooks, sun protection, and flexibility for medical appointments or periods of fatigue. An IEP or 504 Plan may help ensure that appropriate supports are in place.

How can teachers, friends, and family support someone with myositis?

Listen, be patient, and ask what the person needs rather than assuming. Myositis can affect people differently from day to day, so someone may need help at one time and be independent at another. Include them whenever possible, adapt activities when needed, and remember that providing support does not mean lowering expectations. Sometimes the most meaningful thing you can do is simply make sure they are included.

Why might someone with myositis use a wheelchair or other mobility aid?

A person with myositis may use a wheelchair, scooter, walker, cane, braces, or other mobility aids to conserve energy, improve safety, manage weakness or fatigue, and remain independent. Some people use mobility aids all the time, while others use them only for certain distances, activities, or difficult days. Being able to walk does not mean someone does not need or benefit from a mobility aid.

Where can I find trusted myositis resources and support?

You do not have to navigate myositis alone. Patient organizations, educational resources, support communities, and advocacy groups can help you learn more about myositis and connect with others who understand the journey. Explore the resources on this page for information and support for patients, families, caregivers, educators, and friends.

Have questions, need help finding resources, or simply want to connect with someone who understands? You don’t have to navigate myositis alone. Reach out, explore the resources available here, and connect with a community that understands.

You are never alone