Based on a presentation by Grace A. Osborne, MD, PhD, Pediatric Dermatologist, University of Michigan at the January 2026 Cure JM Virtual Summit on JIIM Research & Care
When families first learn that their child has juvenile dermatomyositis, conversations often focus on muscles: strength, fatigue, and inflammation. Yet for many children, the most visible, persistent, and emotionally challenging part of the disease shows up on the skin.
At the JIIM Care & Research Virtual Summit, pediatric dermatologist and researcher Dr. Grace Osborne shared what clinicians and researchers are learning about skin involvement in JDM. Her presentation was aimed at physicians, but the implications are especially important for parents trying to understand why skin symptoms matter, what they may signal about disease activity, and how research is shaping future treatments.
This article translates key points from her presentation into parent-friendly language, without changing the underlying science.
Why Skin Disease Matters in Juvenile Dermatomyositis
One of Dr. Osborne’s core messages was that skin disease in JDM is not secondary, cosmetic, or optional to treat. For some children, skin symptoms are the earliest sign of the disease. For others, skin inflammation becomes the most stubborn part of JDM, lingering even when muscle weakness seems to improve.
Skin involvement can significantly affect quality of life. Rashes may be painful, itchy, or disfiguring, and they can interfere with sleep, school, and social interactions.
Importantly, skin disease can remain active even when laboratory markers or muscle symptoms suggest that the disease is otherwise controlled.
Despite how common and impactful these symptoms are, there are currently no FDA-approved therapies specifically targeted at the skin manifestations of dermatomyositis, either in children or adults. This gap in treatment options is one reason dermatologists and rheumatologists are increasingly advocating for skin outcomes to be included in clinical trials.
Skin Findings Parents May Notice
JDM has several characteristic skin features that help doctors recognize and monitor the disease. Parents often notice these changes long before they have names for them, and understanding what doctors are seeing can reduce uncertainty and anxiety.
Some of the most common skin findings include:
- Raised, reddish-purple patches over joints, especially the knuckles, elbows, and knees
- Purple or reddish discoloration of the upper eyelids, sometimes with swelling
- Rashes that worsen with sun exposure, often on the face, neck, chest, or upper back
- Changes in the fingernail beds, reflecting abnormalities in the tiny blood vessels visible there
- Redness, scaling, or irritation of the scalp
One of the most recognizable signs is the appearance of raised, reddish-purple patches over joints. These findings, called Gottron papules or Gottron sign, are considered classic for dermatomyositis and help distinguish it from other childhood skin conditions such as eczema or psoriasis.
Another hallmark feature is the heliotrope rash, a purplish or reddish discoloration of the upper eyelids that may be accompanied by swelling. Dr. Osborne emphasized that this rash can appear before muscle weakness develops, which is one reason dermatologists play such an important role in early diagnosis.
Many children also develop sun-sensitive rashes. These often affect the face, neck, chest, or upper back and may resemble lupus rashes. Parents may notice that symptoms worsen after outdoor activities, even when sun exposure seems brief.
Changes around the fingernails are another important clue. Using magnification, clinicians can observe abnormal nailfold capillaries, tiny blood vessels that may become dilated, twisted, or sparse. These changes are followed over time because they can correlate with disease activity and, in some cases, prognosis.
Scalp involvement is also common and can be particularly disruptive. Redness, scaling, and inflammation of the scalp may contribute to discomfort, itching, or hair thinning, and often has a meaningful impact on quality of life.
When Skin Disease Becomes More Severe or Long-Lasting
When skin inflammation remains active over time, more serious complications can develop. One of the most challenging is calcinosis cutis, the buildup of calcium deposits in the skin or underlying tissues. Dr. Osborne noted that calcinosis occurs in up to 40% of children with JDM and is more likely when treatment is delayed.
These calcium deposits can be painful, prone to infection, and physically limiting, especially when they develop near joints or areas of frequent movement.
Some children also develop skin ulcers, particularly over pressure points or joints. These sores may reflect more severe blood-vessel involvement and, in some cases, are associated with specific autoantibodies (subgroups of JDM patients.)
Over many years, some children with long-standing disease develop lipodystrophy, a loss of fat tissue that can be partial or widespread. This can have metabolic consequences, including insulin resistance, and requires careful monitoring by medical teams.
Why Sun Protection Is a Cornerstone of Care
Dr. Osborne devoted special attention to sun exposure because it is one of the most modifiable factors affecting skin disease.
Although much of the research on ultraviolet light comes from lupus, available evidence suggests that UV exposure can worsen skin inflammation in dermatomyositis and may even contribute to broader disease flares. For this reason, sun protection is not optional, it is a foundational part of care.
She recommended daily use of high-SPF sunscreen (at least SPF 50), preferably mineral-based formulations that tend to be less irritating. Tinted sunscreens containing iron oxide are particularly helpful because they block visible light as well as ultraviolet radiation. Protective clothing, wide-brimmed hats, and window tinting in vehicles can further reduce exposure. Dr. Osborne also mentioned antioxidant supplements such as Heliocare as a low-risk option that may help reduce UV-induced skin inflammation.
For families, consistent sun protection is one of the few ways to actively reduce disease triggers at home.
How Doctors Think About Treating JDM Skin Disease
Because there are no treatments approved specifically for skin involvement, doctors often rely on a combination of therapies. Topical medications are a mainstay. Dr. Osborne emphasized that topical steroids are often underused due to concerns about side effects. When prescribed appropriately and monitored carefully, they are among the most effective tools for controlling inflammation. Non-steroid topical agents are often added to reduce long-term risks.
Systemic medications used to treat muscle disease such as IVIG, methotrexate, and mycophenolate are also commonly used to manage skin symptoms, although responses can vary. Skin disease may improve more slowly than muscle inflammation, or it may behave independently.
Antimalarial medications can be helpful for some children, particularly those with significant photosensitivity. However, Dr. Osborne noted that about one-third of patients may experience drug reactions, which limits their use.
What Research Is Teaching Us About Skin and Blood Vessels
A major focus of Dr. Osborne’s research is understanding why the skin and blood vessels are so profoundly affected in dermatomyositis. Her work and that of others show that type I interferons, a group of immune signaling proteins, are highly active in affected skin.
These interferons appear to drive inflammation in both the skin and the blood vessels, contributing to the vascular changes seen in rashes, nailfold capillaries, and ulcers.
Research also suggests that immune cells circulating in the blood may directly interact with skin blood vessels, worsening injury.
This growing understanding helps explain why skin disease can be persistent and why newer treatments are increasingly designed to interrupt interferon signaling.
Emerging Treatments Targeting Interferons
Because interferons appear central to skin inflammation, researchers are actively studying medications that block this pathway. Dr. Osborne discussed the growing use of JAK inhibitors, which act downstream of interferon signaling and have shown promise in small studies and case series.
She also highlighted newer therapies designed to block interferon activity more directly. As an example, she referenced a published case report describing a teenager with severe, treatment-resistant skin disease who experienced rapid improvement after receiving an interferon-blocking medication called anifrolumab. She was careful to emphasize that this treatment is not yet approved for JDM, is difficult to obtain, and carries potential risks, including infection.
These therapies represent early but encouraging steps forward, not established standards of care.
What Parents Can Take Away
Dr. Osborne closed her presentation by emphasizing that skin disease in juvenile dermatomyositis deserves serious attention. Early recognition and treatment matter, and ongoing research is rapidly improving understanding of why skin symptoms occur and how they might be better treated.
For parents, a few key points are worth keeping in mind:
- Skin symptoms are a core part of JDM, not a side issue
- Skin disease can be active even when muscle symptoms improve
- Sun exposure can worsen skin inflammation and should be taken seriously
- Many current treatments are used off-label, and responses vary
- Research is increasingly focused on the immune pathways driving skin disease
Understanding the reasons behind skin changes can make the disease feel less mysterious and less overwhelming. While much remains to be learned, the growing focus on skin disease offers real hope that future therapies will address this aspect of JDM more effectively.
About This Article
This article is based on a presentation by Grace A. Osborne, MD, PhD, Pediatric Dermatologist, University of Michigan at the January 2026 Cure JM Virtual Summit on JIIM Research & Care and is intended for educational purposes only. Families should consult their child’s medical team regarding all diagnosis and treatment decisions.
