Juvenile localized scleroderma causes a child’s skin to become unusually thick and hard due to a buildup of collagen. Localized scleroderma targets the skin, connective tissue, and in rare cases, muscle and bone. Treatment prevents the condition from getting worse and includes medications, physical therapy and skin creams.
The word scleroderma comes from two Greek words: “sclera,” meaning hard, and “derma,” meaning skin. The term “localized” means that it mainly involves the skin, connective tissue, muscle and bone.
Scleroderma causes your child’s immune system to attack their skin. As a reaction, your child’s skin inflames (swells). The inflammation can trigger connective tissue cells to produce too much collagen, a protein that’s a major part of many tissues. Excess collagen can lead to fibrosis, which is like scarring. You’ll notice fibrosis forming on your child as a discolored patch of skin.
There are different types of localized scleroderma, each with its own symptoms:
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Juvenile localized scleroderma is a rare condition that affects an estimated 1 in 100,000 children in the U.S.
Symptoms of juvenile localized scleroderma form from a buildup of collagen in your child’s body. This visibly targets your child’s skin, affecting the color and texture of a small area of skin (similar to a bruise). Symptoms progress or change over time and could include:
Severe types of localized scleroderma cause deep patches within your child’s tissues and can cause symptoms like:
Patches that form on your child’s skin can decrease over time but usually need treatment. Patches can return (flare up) after they’ve gone away.
Systemic means that the condition affects the entire body. Juvenile localized scleroderma isn’t systemic. Symptoms of this condition don’t affect your child’s entire body. Instead, the condition is “localized,” which means it only targets certain parts of the body.
The exact cause of scleroderma is unknown. There are likely environmental factors such as exposures, infections or trauma that may contribute, in addition to an overactive immune system.
Children diagnosed with localized scleroderma have hard patches of skin on their bodies because they have too much collagen. Collagen is a protein that structurally supports your tissues and gives them elasticity, which allows them to stretch and bend. If your child has too much collagen in their tissues, their skin thickens, tightens and loses its flexibility.
Localized scleroderma can affect anyone at any age, but the term “juvenile” means that the condition affects children. Children who are white and children assigned female at birth (AFAB) are slightly more likely to have the condition.
Your child’s provider will diagnose localized scleroderma after a physical examination and learning more about your child’s symptoms.
Their provider might order tests to confirm the diagnosis, which could include:
The goal of juvenile localized scleroderma treatment is to stop inflammation, keep the condition from getting worse and reduce the formation of hard (fibrous) tissue. Treatment is unique to each child and depends on how severe their diagnosis is.
Treatment includes some combination of the following options:
Fibrous tissue is the end stage of inflammation. Once the inflammation stops, your child’s body is capable of reabsorbing some of the fibrous tissue and the skin can soften again.
Your child will have the most positive outlook if their condition receives treatment early, when they first get their diagnosis.
You can help your child protect their skin by:
There’s no known way to prevent juvenile localized scleroderma since the cause is unknown.
Juvenile localized scleroderma often affects skin tissues and doesn’t harm major organs. At some point, your child’s hard skin may soften and only hyperpigmented (darkened) areas may have symptoms. Old patches of skin affected by scleroderma can recur (come back), or new skin patches can develop.
Some children may end up with hardened skin, while others may experience damage to their skin or limbs. Your child might need surgery if the condition didn’t respond well to treatment. Your provider won’t recommend surgery until your child finishes growing and the condition is inactive.
Children diagnosed with localized scleroderma can lead a normal life. They should attend school, play sports and take part in extracurricular and family activities. In general, there are no specific limitations to physical activities children want to do (as long as it’s safe). Exercise doesn’t harm children with this condition and it can help build strength in their muscles.
Your child doesn’t need to eat or drink special foods and beverages to treat their condition. Instead, they should eat healthy, well-balanced meals.
Children diagnosed with localized scleroderma have an excellent prognosis (outlook). The condition doesn’t affect your child’s life expectancy.
Visit your child’s healthcare provider if you notice patches on your child’s skin increasing in size, causing pain, or affecting their lifestyle by limiting their range of motion or their ability to move their muscles.
This is a type of linear morphea, which is a type of localized scleroderma. If linear morphea symptoms affect your child’s face or scalp, the condition is known as “en coup de sabre” (French for “cut by a sword”). Symptoms of en coup de sabre appear as an indented, vertical, colorless line of skin on their forehead.
A note from Cleveland Clinic
You may feel worried about your child’s juvenile localized scleroderma diagnosis, but it won’t affect their ability to have a fulfilling childhood. Their symptoms might cause social challenges if they’re uncomfortable with the way symptoms affect their skin. As their caregiver, offer support for your child as they grow. Remind them they’re unique, rather than looking at their diagnosis as a negative part of their life. If your child has trouble moving, playing or participating in normal activities, talk to your child’s healthcare provider.
Last reviewed by a Cleveland Clinic medical professional on 08/21/2023.
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