Localized scleroderma is a chronic autoimmune skin disorder that manifests as excess production of extracellular matrix, specifically collagen, resulting in thickening of the skin and connective tissue.
What are the symptoms of localized scleroderma?
Moderate to severe forms of localized scleroderma can result in significant morbidity, including pain, restricted motion, disfigurement and developmental issues. The localized areas of skin thickening may extend to underlying tissue and muscle. In children this can impair growth and development. Lesions appearing across joints can be painful, impair motion and may be permanent.
How many people are affected by this disorder?
Localized scleroderma encompasses several subtypes – totaling slightly less than 200,000 people in the U.S. – which are classified based on the depth and pattern of the lesion(s). The moderate to severe forms of the disorder include any subtype that affects function or produces symptoms of discomfort, tightness and pain. The U.S. population of patients who are considered to have moderate to severe localized scleroderma is estimated to be approximately 90,000.
Is there a cure or any medical treatments?
Current treatments for localized scleroderma include systemic or topical corticosteroids, UVA light therapy and physical therapy. There are few treatment options to address excessive collagen accumulation in the skin and connective tissue.
Where can I get more information and support?
Additional information and support can be provided by organizations listed below:
American College of Rheumatology
2200 Lake Boulevard NE
Atlanta, GA 30319
Childhood Arthritis & Rheumatology Research Alliance
555 East Wells, Suite 1100
Milwaukee, WI 53202
300 Rosewood Drive, Suite 105
Danvers, MA 01923
Phone: (978) 463-5843
Fax: (978) 777-1313