June is scleroderma awareness month, which provides the public and health care providers a unique opportunity to learn more about this relatively rare disease that affects over 300,000 people in North America.
Because it is relatively uncommon and has a wide variety of symptoms, it’s difficult to diagnose. Many patients suffer with scleroderma for years before getting a diagnosis, yet early diagnosis is key to helping patients have a better quality of life.
This autoimmune disease, which has no known cause or cure, causes hardening skin, stiff joints, digestive issues, lung scarring, kidney failure, and in the worst cases, death. Scleroderma affects thousands across our nation, but there is evidence that it impacts the Black community more severely.
- 80% of patients are women
- There are two types of scleroderma – localized (affects skin on the face, hands, and feet) and systemic (affects the blood vessels and internal organ systems)
- Most patients are diagnosed between the ages of 30-50
- Symptoms and complications include:
- Joint pain
- Heart burn
- Kidney disease
- Skin discoloration
- Fatigue
- Shortness of breath
- Pulmonary hypertension
- Pulmonary fibrosis
- Stiffness
- Muscle pain
- Skin thickening
- Calcium deposits
- Loss of digits
- Skin ulcerations
- Difficulty swallowing
- At five-years, the survival rate is 85%.
Additional information, including compelling patient stories, can be found online. The website is provided by the Scleroderma Research Foundation with support from Boehringer Ingelheim, a leader in respiratory medicine for 100 years and a proud Partner in Health of the Ohio Academy of Family Physicians.
Partners in Health is an online resource that contains links to organizations that provide patient education and high-value tools to support family physicians and their care teams deliver optimal front line care.