Localized Scleroderma - It’s Not Just Skin Deep
Written by Dr. Thomas J.A. Lehman, MD
Pediatric Rheumatologist
Hospital for Special Surgery, New York, NY
2007

I often see children with localized scleroderma. Some times they just have a few circular areas of morphea and other times they have streaks of linear scleroderma running along an arm or leg. Initially parents are very concerned about what can be done to improve their child’s appearance and to prevent new lesions. Once I’ve dealt with their concerns about the appearance parents usually seem happy. Localized scleroderma certainly isn’t pretty, but it isn’t just the appearance we need to worry about.

The impact of localized scleroderma is not limited to the skin. In cases where an arm or a leg are involved there is often damage to the underlying muscle and bone. If only small areas are involved this can be a minor problem of little significance, but where large areas of an arm or leg are involved it can interfere with growth. Where localized scleroderma crosses a joint there can be damage to the underlying joint tissues and it can affect motion. Over and above these direct effects we need to remember the psychological effect the linear scleroderma has on growing children. It is difficult for any child to be different. It is very hard for a child with linear scleroderma to confront the fact that they ‘look different.’

If children with localized scleroderma receive proper care we can minimize both the physical and the psychological impact of the disease. For small areas of skin involvement proper care may just mean cream to soften the lesions. However if a large area of an arm or leg is involved it’s important to remember that the underlying muscle and bone may be involved as well. That’s why just putting a steroid cream on the skin isn’t enough. These children need to be treated with systemic medications to suppress the inflammation. Studies have shown that under the inflamed skin are inflamed muscles which may lead to poor growth of the affected arm or leg. It may not be as thick, as strong, or as long as it was going to be.

Even when these children are treated effectively and the inflammation is controlled they are often left with cosmetic changes. To a physician these may seem like “no big deal,” but that’s not the way the children see them. It’s important that everyone who works with these children give them a chance to verbalize their concerns and if necessary get help in dealing with “looking different.”

Localized scleroderma is not the systemic form of the disease. It doesn’t have heart, lung or kidney involvement. But it does have effects on more than just the skin. As the parent of a child, or as the physician caring for a child with localized scleroderma we all need to be aware that they have direct physical and psychological consequences of their disease. It’s not just skin deep.

Please keep in mind, this webpage is for your information only.
Please check with your child's physician for any treatments.

For more information on Juvenile Scleroderma, contact:

Juvenile Scleroderma Network, Inc.
1204 W. 13th Street, San Pedro, CA 90731

Tel: (310)519-9511 (Pacific Time)
Speak to another JSD parent for emotional and logistical support provided by home-based JSD volunteers. For medical advice, please contact your child's physician.

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