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Family Takes on Juvenile Dermatomyositis

Past, present and future, his battle is our battle and we face it together as a family. There is no rhyme or reason to this disease and there is no cause or cure, but that won’t get us down. JDM is going to realize we are a force to be reckoned with!

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Articles of Interest

Juvenile Myositis 101

Dr. Ann Reed is Chair of the Department of Pediatrics at Duke University and a Professor of Pediatrics at Duke. She’s a world-renowned pediatric rheumatologist and immunologist, who has spent decades caring for children with juvenile dermatomyositis. In this video, Dr. Reed tells us what JDM is, how it is diagnosed, and how it is treated.

A Day in the Life of Someone with Myositis

This was more like “A Month in the Life” since I filmed almost every day this month for Myositis Awareness. I am extremely fortunate to have the support that I do. I hope you enjoy my #MyositisLIFE!

Being on the juvenile dermatomyositis rollercoaster: a qualitative study

Juvenile Dermatomyositis is a rare, potentially life-threatening condition with no known cure. There is no published literature capturing how children and young people feel about their condition, from their perspective. This study was therefore unique in that it asked children and young people what is it like to live with Juvenile Dermatomyositis.

Juvenile dermatomyositis

Muscle weakness and skin rashes are the main symptoms of juvenile dermatomyositis and it affects every child differently – some experience a mild form of the disease while others display a more severe disease progression.

Parenting a Child with Juvenile Myositis | Jason Stafford

When Jason‘s teenage son started complaining about pain and muscle weakness, he figured it was simply “growing pains.” When Logan’s symptoms worsened, however, they knew something much more serious was going on. Listen as Jason and Emily talk about managing the rare condition of Juvenile Myositis.

What is Juvenile Myositis?

JM affects girls twice as often as boys. Once a child is diagnosed with JM, it is always considered to be the juvenile form, even if the patient continues with the disease into adulthood.

Resources

2 Years with Juvenile Dermatomyositis

An update on our daughter’s battle with the rare disease, Juvenile Dermatomyositis (JDM).

Cure JM Foundation

Cure JM Foundation® is a 501(c)(3) nonprofit organization focused on finding a cure for Juvenile Dermatomyositis (JDM) and Juvenile Polymyositis (JPM), the rare and life-threatening autoimmune diseases collectively known as Juvenile Myositis (JM).

JM Friends

Read about other kids with myositis and tell your story too!

Myositis Support and Understanding Association

Juvenile dermatomyositis (JDM) is a systemic, autoimmune inflammatory muscle disorder and vasculopathy that affects children younger than 18 years. JDM primarily affects the skin and the skeletal muscles.

One Hope

Juvenile Myositis is a rare and life-threatening autoimmune disease that has no cure. 1/3 of all kids diagnosed will suffer chronically for the rest of their lives. 1/3 will go into remission and the other 1/3 will, unfortunately, succumb to JM.

Myositis Association Australia

Juvenile Dermatomyositis (JDM) is the condition most often seen in children around the age of 6 years old. JDM is thought to account for 85% of Juvenile Myositis cases. The other form of Myositis that can occur in children – Juvenile Polymyositis – is extremely rare.

The Myositis Association

As is the case for dermatomyositis, the first sign of JDM is usually a skin rash. The rash may be red and patchy, like dry skin; a red or purplish color on the eyelids or cheeks that may look more like allergies; or both. Gottron’s papules, rashes, or lesions over the knuckles, elbows, and knees, and heliotrope rash, a purplish rash around the eyes, are common.

StatPearls

The juvenile form is associated with multisystemic vasculitis and a high frequency of calcinosis. However, unlike the adult form, it does not have an increased risk of malignancy.