Parents and their children who have been diagnosed with scleroderma often seek out trusted resources regarding the disease and available treatments. On this page and the others linked to it, we do our best to share important information that can help you in your journey.
Scleroderma isn’t easy to explain. It’s a complex disease. There are different forms of scleroderma. No one can predict who will get the disease and doctors can’t tell you exactly which symptoms you will experience, or how severe or mild those symptoms will be.
This information is best used as a reference tool when talking with your pediatric rheumatologist. It can help you ask specific questions and share pertinent information so that you and your physician make the best decisions possible regarding your child’s care.
An Overview of Scleroderma and the Differences Between Localized Scleroderma and Systemic Sclerosis:
Scleroderma translates to “hard skin.” The cause and cure of scleroderma are unknown, but it is treatable. There are two main forms of scleroderma:
- Localized scleroderma (LS), also referred to as Morphea (primarily by dermatologists)
- Systemic sclerosis (SSc)
Localized scleroderma and systemic sclerosis are different diseases. Localized scleroderma does not turn into systemic sclerosis. Very rarely, children can have both types of scleroderma, either localized first or systemic first.
Skin Involvement Pattern
Localized scleroderma skin involvement is usually limited to one limb, one side of the head, and/or one side of the body. In the affected site, the involvement is usually not all one large lesion, but instead limited to certain parts of the site or ‘skipping’ in a line or band. Although typically found on one side of the body, it is not uncommon to affect both sides and/or multiple sites.
SSc skin involvement appears on both sides (bilateral). It tends to be circling around all sides of the limb (circumferential) and progresses from the hands, feet, and face to central parts of the body.
In localized scleroderma, the affected non-skin tissues are usually located near to the skin lesion. The most common type involves muscle, tendons, connective tissue (fascia), and joint tissue (musculoskeletal). Children who have a lesion on the head can also have eye, mouth, and brain involvement.
In SSc, besides musculoskeletal involvement, inner organs such as the gastrointestinal tract, lung, heart, and kidneys can be affected. The gastrointestinal tract, lung, heart, and kidneys are rarely seriously affected in localized scleroderma.
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.