SRF Resources

Research is the best hope for a cure. It's also the best source of up-to-date information here and now. Here at the Scleroderma Research Foundation, we're committed to advancing research and sharing what we learn directly with you.

Whether you have been newly diagnosed, have lived with scleroderma for many years, or you care for someone with this disease, it's normal to have questions. We hope to help you learn about scleroderma, understand its complications, and find ways to treat it.

What is Scleroderma?

Scleroderma is an autoimmune disorder—a rheumatic disease that causes inflammation in the skin and other areas of the body. The name scleroderma literally means “hard skin” because the inflammation triggers the body’s own immune system to make too much collagen, leading to the hardening and tightening of the skin and connective tissues (ie: fibrosis). In the most serious cases, there can be complications resulting in damage to the heart, lungs, and digestive system.

Scleroderma is best thought of as a single disease. However, it is a complex disease that can progress in very variable ways in individual patients. Some are affected early with aggressive changes while others have milder symptoms. The disease might progress quickly or slowly. This makes a concise definition—and diagnosis—difficult.

Complications and Treatments

There are various complications and conditions associated with scleroderma. Use these educational resources to stay informed and be an even more effective advocate for your health.

Raynaud’s Phenomenon

Raynaud’s phenomenon is a common medical condition, and women are much more likely to develop Raynaud’s phenomenon than men.

Skin Ulcers

For people with scleroderma, skin ulcers most often appear at the tips of fingers (digital ulcers), may extend under the nails, or to the joints at pressure points.

Calcinosis

Calcinosis is the abnormal collection of calcium salts which form under the skin and in muscles or tendons.

Telangiectasia

Telangiectasias are abnormal blood vessels that usually appear as red dots on the skin or may look like varicose veins, with a spider-web form.

Pulmonary Arterial Hypertension (PAH)

Scleroderma can cause scar tissue in the lungs and thickening in the walls of blood vessels that carry blood to and from the heart to the lungs..

Interstitial Lung Disease (ILD)

Interstitial Lung Disease (ILD) is another complication of systemic sclerosis which may affect breathing. Learn More

Gastrointestinal (GI) Complications

Most people living with scleroderma have gastrointestinal problems, which can involve different levels of risk, from simple indigestion to esophageal blockage.

Joint Complications

The increased production of collagen associated with scleroderma can cause vascular dysfunction. This can contribute to stiffness and pain in the joints and muscles.

Heart Complications

Symptoms of heart involvement in scleroderma depend on the location within the heart and the presence of any underlying conditions.

Kidney Complications

Kidney problems occur in ~15% of scleroderma patients, most often occurring with diffuse skin involvement and skin thickness in the upper arms and trunk.

Your Healthcare, Education, and More

Connect with experienced clinicians and make the most of your interactions with them, by showing up prepared and learning even more about scleroderma.

Treatment Centers

Patients who are diagnosed with scleroderma are encouraged to receive care at a specialized Treatment Center.

Making the Most of Your Doctor Visit

View this guide to how you can prepare for your visits and be your own best advocate.

The SRF Webinar Series

Dive deeper into understanding scleroderma through these in-depth webinars led by expert researchers and clinicians.

Glossary

On our website, we share a glossary of terms that covers common terminology associated with scleroderma.

Participate in Research

Your participation in research is critical to unraveling the mysteries of scleroderma. Learn how you can be involved.

CONQUER Registry

CONQUER is a registry that collects data about scleroderma patients to track and analyze the health status, disease complications, treatments, and outcomes of many patients over many years.

Clinical Trials

Clinical trials are a meaningful way to get involved with research and help find a cure. Search to find trials that are relevant to you.

CONQUEST

Consider enrolling in the CONQUEST study, a scleroderma clinical trial developed by the SRF for people with systemic sclerosis-associated interstitial lung disease (SSc-ILD).

You Can Make a Difference

The Scleroderma Research Foundation’s Cure Crew is a grassroots volunteer program that raises awareness about scleroderma and the funds to support SRF’s research. Cure Crew members around the world are united by a shared belief in the power of research to help people with scleroderma live longer, fuller lives, and lead us closer to a cure.

Make a direct impact on scleroderma research by joining this passionate SRF advocacy community.