What’s the Prognosis for Children with Localized Scleroderma?
Most children and teens with localized scleroderma who start treatment early have a good prognosis. They’re fully able to engage in their normal daily activities, like school, self-care, sports, or play. The outlook for children and teens with LS has greatly improved since 2000 because of great strides made in diagnosis and treatments.
Recent studies show that now, due to advances in care by pediatric rheumatologists, children with jLS are far less likely to have severe function setbacks or a need for major surgery now than in the past:
We won’t stop working to improve the lives of children and teens with this disease.
Some studies suggest that between 15-50% of children with localized scleroderma may have a relapse or recurrence of disease after treatment. In one key study, earlier treatment was associated with lower risk for relapse.
Is a child ever cured of scleroderma?
Unfortunately, there is no cure for scleroderma right now. Many dedicated people are working towards this goal. In most children and teens, disease goes into remission. Their disease becomes inactive. They don’t need to continue their medications. Children need to keep seeing their specialist regularly to monitor for any subtle skin changes. Once they’re in remission, the appearance of their skin usually improves over time.
How will this impact my child’s life, and into adulthood?
Managing a complex disease can be difficult for families: scheduling appointments, filling prescriptions, dealing with side effects. Some children with scleroderma may struggle with their appearance or have weight gain from corticosteroid therapy. Others may face uncomfortable questions from their classmates about their appearance. Families often face questions of “why did this happen to us?” Some children may struggle with having an “invisible and rare disease.” Some parents have shared that their children have specific challenges at school. You may want to meet with teachers or counselors or develop a 504 plan (see Pediatric Education). Reach out to your child’s health care team and scleroderma support groups to gather information, tips, and reassurance.
Most children will experience no impact from juvenile localized scleroderma into adulthood. It may become inactive and require no treatment. However, all children with this condition should follow up with rheumatologists regularly. They should transition into adult care in their late teens or early 20s to watch for relapses. This can occur in 25–40% of children and young adults after they stop taking their medications. Future research may help us predict who’s at a higher risk of relapse.
Some children don’t outgrow all the skin or tissue damage from localized scleroderma. They may have growth abnormalities like legs of different length or facial asymmetry. It may be difficult to treat these changes in their appearance—that’s why it’s important to get a diagnosis and treatment as early as possible. Some children or teens may struggle to cope with their appearance. This could put them at risk for depression or anxiety. Encourage your child to talk openly about their feelings. If you think your child has anxiety or depression, make an appointment with a mental health care provider for counseling and treatment.
Children and adolescents may not be able to openly express their emotions or know how to cope with a challenging disease. Family, school, and community support can help your child recognize and name their emotions. With support, your child can learn ways to cope with the effects of localized scleroderma.
It’s normal for kids to be sad or upset, and they may express their feelings in many different ways: anger, boredom, apathy, frustration, or resistance. Talk with them about their feelings or behaviors. This is the first step to recognize anxiety or depression.
- Recognize your own emotions
- Explain that they are living through a difficult time in their life
- Watch for behavioral changes
- Talk to your child openly about localized scleroderma
- Reassure that they are safe and have your support
- Let them know it’s OK to feel upset about these changes in their body
- Teach them to speak up and be open about their disease and struggles with other people who don’t understand what scleroderma is
- Spend time alone with your child in meaningful activities
- Encourage your child to participate in peer support groups
- Seek help from a mental health professional when needed
- Ask your pediatric rheumatologist to refer you to a mental health professional who is familiar with chronic diseases in children
No two scleroderma journeys are the same, but there are common experiences along the way. No matter where you, your child, or a loved one are in your journey, or the type of scleroderma, the National Scleroderma Foundation can help you find your best path.