What is the disease that causes your body to harden?: Understanding Scleroderma

September 25, 2025 •

5 min read

According to the National Scleroderma Foundation, around 300,000 Americans have scleroderma, the disease that causes your body to harden. This autoimmune condition leads to the overproduction of collagen, resulting in fibrous, tight, and sometimes life-threatening tissue.

Quick Summary

Scleroderma, an autoimmune disease, is the condition that causes the body to harden by triggering an excessive production of collagen, leading to tight, thick skin and potentially affecting internal organs. The disease's severity and specific symptoms vary widely among individuals.

Key Points

Scleroderma is the disease: Scleroderma is the autoimmune disorder that causes the body to harden due to an overproduction of collagen.
Two main types: The disease exists in localized forms, primarily affecting the skin, and more serious systemic forms, which can impact internal organs.
Symptoms vary widely: Besides hard skin, symptoms include joint pain, Raynaud's phenomenon (discolored fingers/toes), digestive issues, and fatigue.
No cure, but manageable: While there is no cure, a combination of medications, physical therapy, and lifestyle changes can effectively manage symptoms and prevent complications.
Diagnosis can be complex: A rheumatologist typically diagnoses scleroderma using a combination of physical exams, blood tests for antibodies, and imaging studies.
Environmental and genetic triggers: The exact cause is unknown, but a mix of genetic predisposition and environmental factors is believed to play a role.
Internal organs can be affected: In systemic scleroderma, vital organs like the heart, lungs, and kidneys can suffer damage due to fibrosis.

Scleroderma: An Overview of “Hard Skin”

Scleroderma derives its name from the Greek words “sclero” (hard) and “derma” (skin), an apt description for its primary and most visible symptom: the thickening and tightening of the skin. However, this complex, chronic, and non-contagious disease is far more than a skin condition. As an autoimmune disorder, it involves the immune system mistakenly attacking the body's own healthy tissues. This triggers an overproduction of collagen, a fibrous protein vital for connective tissue, leading to an excess buildup of scar-like tissue throughout the body.

The impact of scleroderma can range from localized and mild, primarily affecting the skin, to systemic and severe, causing damage to internal organs such as the heart, lungs, and kidneys. While there is currently no cure, prompt and accurate diagnosis is crucial for managing symptoms and minimizing irreversible damage through various treatment options.

Understanding the Root Cause: An Autoimmune Response

At its core, scleroderma is a mystery of the immune system. For reasons that are not yet fully understood, the body's protective mechanisms go awry. Instead of fighting off foreign invaders like bacteria or viruses, the immune system targets its own connective tissues. This erroneous attack stimulates cells to produce excessive amounts of collagen, far beyond what is needed for normal repair. The continuous and uncontrolled production of this protein leads to fibrosis, which is the formation of thick, hard scar tissue.

Researchers believe a combination of genetic and environmental factors may trigger this immune system malfunction. While the disease does not strongly run in families, certain genetic predispositions can increase susceptibility. Environmental factors, such as exposure to certain chemicals like silica dust, have also been implicated in some cases.

The Different Types of Scleroderma

Scleroderma presents in two main forms, with different levels of severity and organ involvement.

Localized Scleroderma (Morphea)

This is the most common form, typically affecting only the skin and the tissues directly underneath it, with internal organs usually spared. It is often less severe and can sometimes resolve on its own over time. Localized scleroderma can manifest in two key ways:

Morphea: Causes firm, oval-shaped, or irregular patches of hardened, waxy skin on the trunk, limbs, or face.
Linear Scleroderma: Appears as lines or bands of hardened skin, often on an arm or leg, which can affect underlying muscle and bone. This is the most common type in children.

Systemic Scleroderma (Systemic Sclerosis)

This more serious form affects large areas of skin and can also damage internal organs and blood vessels throughout the body. Systemic sclerosis is further classified into subtypes:

Limited Cutaneous Systemic Sclerosis: Often known as CREST syndrome, it involves skin thickening primarily on the fingers, hands, lower legs, and face. This type is associated with a slower progression but can still lead to serious complications like pulmonary hypertension.
Diffuse Cutaneous Systemic Sclerosis: Characterized by more widespread skin thickening, including the upper arms, legs, and trunk. It progresses more rapidly and has a higher risk of early organ damage, particularly to the lungs and kidneys.
Systemic Sclerosis Sine Scleroderma: In this rare type, internal organs are affected without any visible skin thickening.

Symptoms Beyond the Skin

While skin hardening is the most notable sign, scleroderma’s impact extends to many other parts of the body. Symptoms are highly individual and depend on the specific type of the disease.

Raynaud's Phenomenon: Often the first sign, this involves an exaggerated response of small blood vessels to cold or stress, causing fingers and toes to turn white, then blue, and finally red.
Joint and Muscle Pain: Many people experience joint pain, stiffness, and swelling. The tightening of skin around joints can restrict movement, leading to contractures.
Gastrointestinal Issues: Scleroderma can affect the digestive tract, causing heartburn, difficulty swallowing, bloating, and problems with nutrient absorption.
Fatigue: Persistent and overwhelming fatigue is a common and often debilitating symptom.
Calcinosis: Painful, hard lumps caused by calcium deposits can form under the skin, especially on fingertips and bony areas.
Telangiectasia: Tiny, widened blood vessels visible just under the skin, appearing as small red spots on the hands and face.

The Challenges of Diagnosis

Diagnosing scleroderma can be challenging due to the wide variation of symptoms and its similarity to other autoimmune diseases. A rheumatologist, a doctor specializing in these conditions, is key to the diagnostic process, which typically involves a combination of clinical assessment and tests.

Physical Exam: A doctor will look for visible signs like tight, thick skin and examine the nail beds for abnormal blood vessels.
Blood Tests: These check for specific antibodies, such as ANA, which are common in autoimmune diseases.
Imaging Tests: X-rays, CT scans, and echocardiograms can be used to check for internal organ damage in systemic cases.
Skin Biopsy: While not always necessary, a biopsy can help differentiate scleroderma from other conditions.

Treatment and Management Strategies

Since there is no cure, treatment for scleroderma focuses on managing symptoms, slowing disease progression, and preventing complications. A comprehensive and individualized approach is essential, involving various therapies and lifestyle adjustments.

Medications: Treatments often include immunosuppressants to suppress the overactive immune system, blood pressure medications to help with Raynaud's or kidney problems, and medications to manage gastrointestinal symptoms.
Therapies: Physical and occupational therapy are vital for maintaining flexibility and strength, especially for affected joints and hands. Hand therapy can help prevent stiffness and contractures.
Lifestyle Adjustments: Protecting the skin with moisturizers and sunscreen, staying warm to manage Raynaud's phenomenon, and quitting smoking are crucial. Exercise is important for flexibility and circulation.
Stem Cell Transplants: For severe cases, autologous hematopoietic stem cell transplantation (HSCT) may be an option, performed in specialized centers.

Comparing Localized vs. Systemic Scleroderma


Feature	Localized Scleroderma	Systemic Scleroderma
Affected Areas	Primarily skin, and sometimes underlying muscle or bone.	Widespread skin and multiple internal organs (heart, lungs, kidneys, GI tract).
Severity & Progression	Usually milder. May spontaneously improve or resolve.	More severe. Often progressive and can be life-threatening.
Internal Organ Involvement	Rare.	Common.
Subtypes	Morphea and Linear Scleroderma.	Limited (CREST) and Diffuse.
Early Symptoms	Patches or lines of thick, waxy skin.	Raynaud's phenomenon, swollen fingers, and fatigue.

Conclusion

Scleroderma is a serious and challenging autoimmune disease that can have a profound impact on a person's life, from skin hardening to potentially severe organ damage. While the search for a cure continues, effective management strategies exist to control symptoms and improve quality of life. The key is to receive a timely and accurate diagnosis from a rheumatologist with expertise in the condition. With a holistic approach involving various specialists, therapies, and lifestyle adjustments, individuals with scleroderma can manage their symptoms and continue to lead long, fulfilling lives. For more information and resources, visit the National Scleroderma Foundation.

Frequently Asked Questions

Scleroderma is an autoimmune disease, meaning the immune system mistakenly attacks healthy connective tissue. This triggers an overproduction of collagen, leading to the characteristic hardening of skin and other tissues.

Localized scleroderma affects only the skin and tissues directly beneath it, often resolving on its own. Systemic scleroderma is more severe, affecting large areas of skin and potentially causing serious damage to internal organs like the heart and lungs.

Currently, there is no cure for scleroderma. Treatment focuses on managing specific symptoms, slowing the progression of the disease, and preventing complications through medications, physical therapy, and other interventions.

The severity varies greatly. While localized forms are generally not life-threatening, systemic scleroderma can be fatal due to complications involving internal organs such as the lungs, heart, or kidneys. Early diagnosis and monitoring are critical.

One of the most common early signs is Raynaud's phenomenon, where fingers and toes change color in response to cold or stress. Other initial symptoms can include puffy or swollen hands and joint pain.

Treatments include immunosuppressants, blood pressure medications, topical creams, and physical or occupational therapy. The specific approach depends on which parts of the body are affected and the disease's severity.

Scleroderma is not contagious. While it is not typically inherited directly, research suggests there may be a genetic component that increases susceptibility. Environmental factors are also believed to play a role.

A rheumatologist is the specialist who can diagnose and manage scleroderma. They may work with a multidisciplinary team of other specialists, depending on which organs are affected.