Scleroderma is an ongoing (chronic) disease that causes abnormal growth of connective tissue. It can affect the joints, skin, and internal organs. It is a rare degenerative disease and gets worse over time.
There are 2 main types of scleroderma: localized and systemic.
Localized scleroderma. The disease only affects 1 area of the body. This form of the disease is seen more often in children. It may involve patches of skin on the trunk, arms, legs, or head.
Systemic scleroderma. This type affects the whole body. It rarely occurs in children.
Scleroderma is thought to be an autoimmune disease. This means the symptoms are caused by the body attacking its own healthy tissues. Genes play a role in the disease, but it is not passed on from parents to children. Some environmental factors may also play a role.
Scleroderma can lead to scarring of the skin, joints, and internal organs. Symptoms can occur a bit differently in each child, and may include:
Symptoms of localized sclerosis may include:
These symptoms can seem like other health conditions. Make sure your child sees his or her healthcare provider for a diagnosis.
Your child’s healthcare provider will take your child’s medical history and do a physical exam. Diagnosis is based on the changes in the skin and internal organs. An antibody test may help show the type of scleroderma. Other tests may also be done, such as:
Your child's healthcare provider will figure out the best treatment plan for your child based on:
Treatment may include:
Talk with your child’s provider about the risks, benefits, and possible side effects of all medicines.
Complications of scleroderma vary depending on the type of the disease and how severe it is. Treatment may prevent or reduce problems. Possible complications may include:
Work with your child's healthcare provider. Together you can make a treatment plan. The plan can help your child be active as much as possible in school, and in social and physical activities. Make life as normal as possible for your child. Encourage exercise and physical therapy and find ways to make it fun. You can also help your child find a support group to be around other children with scleroderma. Work with your child's school to make sure your child has help as needed. Your child may also qualify for special help under Section 504 of the Rehabilitation Act of 1973.
Tell the healthcare provider if your child's symptoms get worse or there are new symptoms.
Tips to help you get the most from a visit to your child’s healthcare provider:
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