A picture of a person with scleroderma

Module: Scleroderma: Basic Overview

Elaine A. Furst, RN, MA, Janet L. Poole, Ph.D., OTR/L, Cindy Mendelson, PhD, RN, Dinesh Khanna, MD, MS

  • The number of adults with all types of scleroderma in the US is estimated to be approximately 300,000.
  • Women outnumber men by approximately 7-8 to 1. Onset is uncommon under the age of 25. The most common age of onset is between 40 and 50 years old. Only 1% of people with scleroderma are children.
  • African Americans have a slightly higher risk of getting scleroderma than Caucasians. They also get the illness at a younger age. African Americans and Latinos tend to have a more severe form of the disease than Caucasians. The severe form is called diffuse scleroderma.
  • It can take 1-3 years from symptoms to diagnosis, although this time frame is getting shorter.
  • The involvement of internal organs usually occurs within the first 3-5 years after diagnosis. This might include kidney disease, lung disease, heart disease and severe fatigue. The exception is pulmonary hypertension, which usually happens late in the disease. Other long-term problems include severe heartburn and digestive problems, arthritis (pain and inflammation of the joints), and curling of the fingers due to tight skin.