In speaking with JM families, we’ve identified seven “best practices” that are absolutely crucial when you, your child and family are battling juvenile myositis.
How to apply the nutrition and exercise recommendations sometimes provided by healthcare providers and make them work for your family in the “real world.”
Helpful tips from other JM families on topics like reducing anxiety during treatments, shots and blood draws, dentist visits, sun shades, journaling, and more!
Many students with juvenile dermatomyositis or juvenile polymyositis need some special accommodations at school. And although each student is different, here is a list of some common accommodations that other Cure JM families have found helpful in the past.
There are resources available for mental health care though it can take awhile to research them, access them, and follow up on the care.
Preparing for the transition to adult care may begin with patients beginning to take an age-appropriate role in their care as early as the tween years.
Besides the normal turmoil of adolescence, having a diagnosis of juvenile myositis can present you with more stress due to changes in body image, medical visits, medicines, etc.
The main role of a Child Life Specialist is to help relieve the stress and anxiety that children feel when they become patients; whether in a doctor/dentist office, hospital, emergency room, hospice or any other setting in which children are served.
The first few days, weeks and months after diagnosis are often overwhelming. We hope these ideas help you find ways to organize and support yourself and your child as you begin this new journey.
In order to understand how our families cope with mental health, we collaborated with Andrea Knight MD MSCE, an expert in the autoimmune and mental health fields.
Here are some tips from Anna, Morgan and Samantha to help you navigate medical and social issues like medications, socializing, school, and diet.
Kids with JDM experience depression and anxiety at 2-3 times a higher rate than their peers. We hope that by outlining the common signs and symptoms of depression and anxiety, you are better able to support your children.
As the parent of a newly diagnosed child, you might feel overwhelmed and worried. These are normal reactions. You might want, and need support, from others who have been, or still are, on this same journey.
Here are some resources and recommendations for ways of addressing pain. These come from pediatric rheumatologists and other medical providers/researchers.
Did you know an average white t-shirt only has a UPF of 7? And that drops to UPF3 when wet? A dark denim shirt can have a UPF of 1700, but how many children would be happy wearing such a heavy fabric on a hot day?
The Social Security and Supplemental Security Income disability programs are the two largest Federal programs providing assistance to people with disabilities.
Informing your child’s school personnel about juvenile myositis is important. Parents have reported a variety of avenues they have taken in order to do this.
Helpful links for government resources such as the Social Security Administration, Social Security Disability Insurance, Supplemental Security Income, and more.
The number of medications used to manage juvenile myositis and its side effects can be overwhelming. Cure JM developed this sample medication chart to help you stay organized.
Tips and links for dealing with insurance claims, denials and appeals, making phone calls, changes in health care law, help with medical bills, and more.
One of the ways you can help your children cope with juvenile myositis is by giving them a sense of control over their doctor visits and treatments.
Do you know the warning signs of depression and anxiety? Has your child had a mental/emotional health assessment? Here are some resources for you, your child, and other family members.