National Scleroderma Awareness Month: Understanding This Rare Autoimmune Disease

June is National Scleroderma Awareness Month, a time to raise awareness about a rare autoimmune disease that affects roughly 300,000 people across the United States. Whether you’ve just received a diagnosis, are supporting a loved one, or are learning about the condition for the first time, raising awareness can make a significant difference.

Continue reading to learn more about scleroderma, who it affects, and why awareness is essential.

What Is Scleroderma?

Scleroderma is a chronic autoimmune disorder classified as a rheumatic disease characterized by inflammation in the skin and other body parts. The term scleroderma means “hard skin,” referring to one of the condition’s hallmark features: the overproduction of collagen. Excessive collagen production causes the hardening and tightening of the skin and connective tissues—a process known as fibrosis. In more severe cases, scleroderma can cause significant complications by damaging internal organs such as the heart, lungs, and digestive system.

Although often described as a single disease, scleroderma represents a complex and highly variable condition. Its progression and severity can differ widely from person to person. Some individuals experience rapid and aggressive symptoms early on, while others may have a much milder, slow-progressing form of the disease. The wide variability of scleroderma presents significant challenges in concisely defining and diagnosing the condition.

There are two main types:

• Localized Scleroderma:

Scleroderma of this kind primarily affects the skin and may also involve the underlying tissues, such as fat or muscle. Unlike more serious types, it typically does not affect major organs, such as the heart or lungs. It often appears as patches or streaks of thick, hardened skin. There are different types, such as morphea (characterized by round patches) or linear scleroderma (which presents as streaks, often on the arms, legs, or face).

While it doesn’t usually threaten your overall health, it can still cause visible changes to the skin or limit movement if it affects joints or the face. Treatment can help, and in some cases, the condition may improve or stabilize over time.

• Systemic Sclerosis (Systemic Scleroderma):

A more severe form of scleroderma affects the skin and internal organs, including the lungs, heart, kidneys, and digestive system. It occurs when excessive collagen, a protein that helps form connective tissue, accumulates, leading to thickening and hardening in various body parts.

Symptoms depend on the organs involved, including trouble breathing, high blood pressure, kidney problems, digestive issues, or heart complications. Doctors categorize systemic sclerosis into limited and diffuse, depending on the extent of skin and internal organ involvement. Catching it early and maintaining regular medical care is crucial to help manage symptoms and protect your health.

Who Is Affected?

• An estimated 300,000 people in the U.S. are living with scleroderma.
• About 80% of patients are women, typically diagnosed between the ages of 30 and 50.
• It affects people of all races and ethnic backgrounds, although research shows differences in how the disease presents across populations.

Common Symptoms

Symptoms vary widely, depending on the type and severity of the condition, but may include:

• Skin thickening or hardening
• Raynaud’s phenomenon (cold-induced color changes in fingers and toes)
• Joint pain or stiffness
• Digestive issues like acid reflux or trouble swallowing
• Shortness of breath occurs if the lungs are affected
• Exhaustion and chronic pain

Diagnosis and Tests

Doctors diagnose scleroderma through a physical exam, blood tests for specific autoantibodies (such as ANA or anti-Scl-70), and imaging to evaluate organ involvement. Pulmonary function tests or echocardiograms help assess the impact on the lungs, heart, or kidneys. A rheumatologist often leads the diagnosis and care.

Management and Treatment Options

Management and treatment of scleroderma focus on relieving symptoms, slowing disease progression, and preventing complications, as there is currently no cure. Treatment plans are highly individualized and may include immunosuppressants, anti-inflammatory drugs, or vasodilators to improve blood flow and reduce skin thickening.

Physical and occupational therapy can help maintain mobility and function. Regular monitoring of internal organs — especially the lungs, heart, and kidneys — is essential to detect and manage systemic involvement early. At the same time, lifestyle changes such as protecting the skin from cold and injury can also improve quality of life.

Why Awareness Matters

Because scleroderma is rare and complex, patients often face delays in diagnosis and limited treatment options. Increased awareness can:

• Encourage early diagnosis and intervention
• Inspire more research funding
• Improve access to care and support
• Reduce stigma and isolation among those affected

June is an opportunity to honor scleroderma warriors’ resilience and rally for better treatments — and ultimately, a cure. The American College of Rheumatology offers up-to-date clinical guidance and research on autoimmune diseases, including scleroderma.