The pediatric craniofacial specialists at the North Carolina Cleft and Craniofacial Center coordinate their efforts to provide holistic care for children with scleroderma and other craniofacial differences. Scleroderma means “hard skin” and is a rare autoimmune disease that causes swelling in the skin and can, over time, cause the skin to become thick and hardened. In especially rare cases in children, it can also affect blood vessels, muscles, and joints, contributing to joint pain and stiffness and the development of scar tissue in the internal organs. 

One type of scleroderma is localized scleroderma, which affects only certain regions of the skin. Morphea causes hard, oval, or irregularly shaped patches on the skin, while linear scleroderma causes lines or streaks of thickened skin to form over an area of the head, arm, or leg. Symptoms include shiny, thickened, discolored skin; joint stiffness and decreased range of motion; jaw changes; and a shorter or smaller limb on one side if deeper tissue is affected.

Another type is systematic scleroderma, which affects the whole body and is much less likely to occur in children. Symptoms of systematic scleroderma can be similar to localized scleroderma, but additional symptoms are also possible, including difficulty swallowing; abdominal pain, heartburn, and diarrhea; shortness of breath, with chronic cough; and Raynaud’s phenomenon (white, blue, or red appearance of the fingers or toes when exposed to cold or emotional distress).


A child may be diagnosed with scleroderma if they display the characteristic skin changes. A physician may order lab tests to rule out other similar conditions and determine if other organs are affected.


Our multidisciplinary team of board-certified specialists works together to provide the best possible care for your child and is here for you from initial consultation through treatment and aftercare. We evaluate each child’s needs and create a unique treatment plan based on the latest research and technology and our years of experience.
Treatment aims to reduce inflammation and pain, stop the disease from progressing, and prevent it from affecting the internal organs. A pediatric rheumatologist will coordinate treatment measures after consulting with specialists experienced in treating disease in the affected organs. 

Modes of treatment for scleroderma include: 

  • Skin protection, including measures to:
    • Improve blood flow to the skin, especially to the hands and feet
    • Prevent injury to the skin 
    • Prevent sunburn
    • Prevent exposure to extreme cold
  • Medications, such as:
    • Corticosteroids to reduce inflammation
    • Non-steroidal anti-inflammatory drugs 
    • Drugs that widen blood vessels to improve blood flow
    • Immunosuppressive medicine
  • Physical therapy, which can help maintain flexibility, range of motion, muscle strength, and blood flow

Surgery is rarely necessary, but orthopedic surgery can be considered in cases of severe joint contractures.


From the initial consultation through treatment and recovery, children receive continued supportive services at the North Carolina Cleft and Craniofacial Center, including regular check-ins, physical and occupational therapy and psychosocial support.