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Juvenile Scleroderma

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Sometimes, your healthy child’s immune system can go into overdrive — and turn against them.

Suddenly their skin looks thicker. Their hands and feet seem swollen. And their joints and muscles aren’t working like they should. They might have an autoimmune disorder called juvenile localized scleroderma. In rare cases, your child’s internal organs, like their heart, lungs and stomach, might also be affected. When this happens, they may have systemic scleroderma (also called systemic sclerosis).

When your child suddenly has symptoms like these, it can be hard to understand what’s happening, and you might worry about what lies ahead. Cleveland Clinic Children’s can help. Our team of experienced pediatric healthcare providers include leaders in pediatric rheumatology. They’ll treat your child with compassion and skilled expertise.

Why Choose Cleveland Clinic Children's for Juvenile Scleroderma Care?

Collaborative care:

Juvenile scleroderma can affect many parts of your child’s body, so they may have a team of pediatric providers from different specialties caring for them. This team will work together to confirm a diagnosis, plan treatment and help keep your child thriving and active. Meet our team.

Patient-centered care:

If your child has juvenile scleroderma, they’ll need lifelong treatment. As your child becomes a young adult, we’ll help them learn to manage their healthcare needs and move smoothly to an adult care plan.

Recognized expertise:

Juvenile scleroderma is often misdiagnosed as other autoimmune disorders. At Cleveland Clinic Children’s, our expertise and thorough testing provide an accurate diagnosis and treatment.

Innovation and research:

Our specialists collaborate with other pediatric rheumatologists nationwide to research new ways to diagnose and treat many pediatric rheumatic disorders, including juvenile scleroderma. As part of our research, your child may be eligible to participate in clinical trials for innovative treatments.

Virtual visits:

Not all appointments need to be in person. When it’s easier to stay home, our online virtual visits can be a convenient option for some appointments. All you need is an internet connection and a smartphone, computer or tablet to meet with Cleveland Clinic Children’s providers.

National recognition:

Cleveland Clinic Children’s is a trusted healthcare leader. We’re recognized throughout the U.S. for our expertise and care.

Juvenile Scleroderma Diagnosis at Cleveland Clinic Children’s

When you come in for your child’s appointment, the first thing their provider will do is give them a physical exam. They’ll look to see if their skin is thick and tight (hard) and if their hands aren’t working as well as they should. They might also check for color changes in their fingers or toes (Raynaud’s phenomenon), calcium deposits under their skin and enlarged blood vessels on their hands, face and around their nailbed.

Your child’s provider will also ask you and your child about their symptoms and medical history to get a better idea of what’s been happening.

Next, they may order some tests. No single test can diagnose juvenile scleroderma. And, depending on the type of scleroderma your child may have (localized or systemic), their provider may do different tests to confirm a diagnosis.

Testing for juvenile scleroderma

If we think your child may have juvenile localized scleroderma, there are a few tests we may order to confirm the diagnosis and find out how deeply their tissues are involved. Your child might have:

A skin biopsy of the damaged area (lesion).
An MRI (magnetic resonance imaging) to measure how deep the lesions are.

Testing for juvenile systemic scleroderma

If we think your child may have juvenile systemic scleroderma, we may order tests to look closely at how your child’s body is working. Your child might have:

Blood tests to see if any of their internal organs are affected.
X-rays to check for changes in their bones, skin or internal organs.
A swallowing test (esophagram) to check how well their esophagus (food tube) is working.
A breathing test (pulmonary function testing) to measure how well their lungs are working.
An echocardiogram (echo) to take a closer look at their heart.

We’ll go over the test results and our diagnosis with you and your child, using age-appropriate language to help them understand what’s happening. And no matter the diagnosis, we’ll provide you with the resources you need to help your child feel their best.

Meet Our Juvenile Scleroderma Team

Juvenile scleroderma can affect many parts of your child’s body, including their skin, joints, muscles and internal organs. At Cleveland Clinic Children’s, your child’s juvenile scleroderma care team will be led by a highly skilled pediatric rheumatologist. Depending on their needs, other providers on their team may include:

Pediatric dermatologists.
Pediatric nephrologists.
Pediatric cardiologists.
Pediatric pulmonologists.
Pediatric gastroenterologists.
Child life specialists.
Pediatric physical therapists.
Pediatric occupational therapists.

Providers Who Treat Juvenile Scleroderma

Locations

We offer treatment for juvenile scleroderma at the following location in Northeast Ohio.

Juvenile Scleroderma Treatment at Cleveland Clinic Children's

If we do confirm that your child has either localized scleroderma or systemic scleroderma, we’ll start crafting a personalized care plan to reduce inflammation, stop the condition from getting worse, protect or treat their internal organs and keep your child active. We’ll consider how severe their disease is and their symptoms when we build this plan.

Your child’s unique treatment plan may include a combination of skin protection strategies, medications, physical and occupational therapy. If their internal organs are affected, they may also see other specialists in order to treat all their symptoms and focus on preventing more organ damage.

Skin protection

Juvenile scleroderma can irritate your child’s skin and make it prone to injury. We’ll talk with you and your child about how to protect their skin by:

Choosing the right moisturizers and cleansers.
Protecting their skin from the sun and extreme temperatures.
Avoiding harsh chemicals and fragrances.
Avoiding certain medications.

Physical and occupational therapy

Stretching and exercise can help keep your child’s joints moving and their muscles strong. They can also increase blood flow to their skin, which can help reduce symptoms of scleroderma.

Our physical and occupational therapists will work with your child on a regular basis. They’ll track your child’s progress and help them set goals. And they’ll work closely with your child’s rheumatologist and any other providers.

Medications

We may recommend oral (by mouth), topical (on the skin) or intravenous (in a vein) medications to reduce inflammation, slow down the condition’s progression and treat pain. We’ll keep an eye on your child and watch for any side effects. Medications we may prescribe could include:

Corticosteroids, which lessen inflammation in their muscles, joints and skin.
Nonsteroidal anti-inflammatory drugs (NSAIDS) to reduce joint inflammation.
Disease-modifying antirheumatic agents (DMARDS) to limit their immune system’s ability to damage their skin and internal organs.
Medications that help manage other symptoms, like Raynaud’s phenomenon or heartburn.

Taking the Next Step

You always want your child to feel their best, no matter what. And that also means getting the best care when they have a health condition, like juvenile scleroderma. Cleveland Clinic Children’s providers will help you and your child understand their juvenile scleroderma and learn how to manage it. We want to help your child thrive at just being a kid.