Scleroderma Guide: Symptoms, Causes, Diagnosis, and Treatment

Medically reviewed by Dr. Baraa Alnahhal, MD · Last reviewed: September 2026

TL;DR: Scleroderma — also called systemic sclerosis — is a group of rare diseases in which the body produces too much collagen, causing the skin to harden and tighten and, in many people, affecting the blood vessels, digestive tract, lungs, heart, and kidneys. It is more common in women and usually begins between ages 30 and 50. There is no cure that stops the collagen overproduction, but medicines that dilate blood vessels, suppress the immune system, ease digestion, and relieve pain — combined with physical therapy and daily self-care — can control symptoms, slow progression, and protect quality of life.

Quick Answer

• Scleroderma is caused by excess collagen building up in body tissues, hardening and tightening the skin and sometimes affecting internal organs

• The first areas affected are usually the fingers, hands, feet, and face, and Raynaud's phenomenon — fingers turning white, blue, gray, or red in the cold — is very common

• It is more common in women and typically starts between ages 30 and 50; Black adults often have earlier onset and more skin and lung involvement

• No treatment stops the collagen overproduction, so care focuses on controlling symptoms and preventing complications

• Daily self-care matters as much as medicines: stay active, protect skin, don't smoke, manage heartburn, and stay warm

What This Guide Is Based On

This guide is built entirely from specialist-reviewed clinical guidance published and updated by a major academic medical center (updated June 15, 2024). The information is consistent with leading clinical references, including the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) scleroderma resource, Goldman-Cecil Medicine (27th edition, 2024), Ferri's Clinical Advisor 2024, Weedon's Skin Pathology (5th edition, 2021), UpToDate's adult systemic sclerosis overviews, the Scleroderma Foundation's coping guidance, and the American College of Rheumatology's vaccination guidelines for rheumatic disease. Wherever the clinical picture carries uncertainty — such as which environmental triggers start the disease — this guide says so plainly. This guide is for education only and is not a substitute for care from a qualified clinician.

What Is Scleroderma?

Scleroderma (sklair-oh-DUR-muh), also known as systemic sclerosis, is a group of rare diseases that involve the hardening and tightening of the skin. The disease can also cause problems in the blood vessels, internal organs, and digestive tract.

The root cause is a collagen problem. Collagen is the fibrous protein that makes up the body's connective tissues, including the skin. In scleroderma, the body produces too much collagen, and it builds up in the tissues — which is what makes the skin harden and tighten.

Experts don't know exactly what starts this process, but the immune system appears to play a role. Most likely, scleroderma results from a combination of immune system problems, genetics, and environmental triggers.

Scleroderma is often categorized as limited or diffuse, which refers only to the degree of skin involvement. Both types can involve the vascular and organ symptoms that are part of the disease. A third form, localized scleroderma — also known as morphea — affects only the skin.

Infographic: how excess collagen hardens the skin, the limited versus diffuse forms of scleroderma, and who is most affected.

What Are the Symptoms of Scleroderma?

Scleroderma symptoms vary from person to person, depending on which parts of the body are affected. Nearly everyone with scleroderma experiences hardening and tightening of the skin.

The first parts of the body affected are usually the fingers, hands, feet, and face. In some people, the thickening also involves the forearms, upper arms, chest, abdomen, lower legs, and thighs. Early symptoms may include swelling and itchiness. The color of affected skin can become lighter or darker, and the skin may look shiny because of the tightness. Some people also develop small red spots — called telangiectasia — on their hands and face, and calcium deposits can form under the skin at the fingertips, creating bumps visible on X-rays.

Raynaud's phenomenon is common in scleroderma. It happens because of an exaggerated contraction of the small blood vessels in the fingers and toes in response to cold temperatures or emotional distress. The digits may feel painful or numb and turn white, blue, gray, or red. Raynaud's phenomenon can also occur in people who don't have scleroderma.

• Skin — Hardening and tightening, usually starting at fingers, hands, feet, and face; swelling and itchiness early on; shiny skin; lighter or darker coloring

• Blood vessels — Raynaud's phenomenon — digits turn white, blue, gray, or red in cold or stress, and feel painful or numb

• Digestive tract — Heartburn; difficulty swallowing; bloating; diarrhea; constipation; fecal incontinence

• Lungs and heart — Shortness of breath; decreased exercise tolerance; dizziness; irregular heartbeats

How Does Scleroderma Affect the Digestive Tract, Lungs, and Heart?

Scleroderma can affect any part of the digestive system, from the esophagus to the rectum. Depending on which parts are involved, symptoms may include heartburn, difficulty swallowing, bloating, diarrhea, constipation, and fecal incontinence.

When the disease affects the heart or lungs, it can cause shortness of breath, decreased exercise tolerance, and dizziness. Scleroderma can cause scarring in the lung tissues that results in increasing shortness of breath over time — and there are medicines that may help slow the progression of this lung damage.

The disease can also raise the blood pressure in the circulation that goes between the heart and the lungs — a condition called pulmonary hypertension. Along with shortness of breath, pulmonary hypertension can cause excess fluid to build up in the legs, feet, and sometimes around the heart. When scleroderma affects the heart itself, heartbeats can become irregular, and heart failure may happen in some people.

What Causes Scleroderma?

Scleroderma happens when the body produces too much collagen and it builds up in body tissues. Collagen is the fibrous protein that makes up the body's connective tissues, including the skin.

Experts don't know exactly what causes this process to begin, but the immune system appears to play a role. Most likely, scleroderma is caused by a combination of three factors:

Immune system conditions. Scleroderma is believed to be an autoimmune disease, meaning it occurs in part because the body's immune system begins to attack the connective tissues. People with scleroderma may also have symptoms of another autoimmune disease such as rheumatoid arthritis, lupus, or Sjogren syndrome.

Genetics. People who have certain gene changes appear to be more likely to develop scleroderma. This may explain why the disease appears to run in families in a small number of people, and why some types are more common in certain racial and ethnic groups.

Environmental triggers. Research suggests that in some people, symptoms may be triggered by exposure to certain viruses, medicines, or drugs. Repeated exposure at work to certain harmful substances or chemicals may also increase risk. For most people, no environmental trigger is identified.

Who Is Most at Risk?

Anyone can get scleroderma, but it is more common in people assigned female at birth, and people typically develop it between ages 30 and 50. Black people often have earlier onset and are more likely to have more skin involvement and lung disease.

• Sex — More common in people assigned female at birth

• Age — Typically begins between ages 30 and 50

• Race and ethnicity — Black people often have earlier onset, more skin involvement, and more lung disease; certain types are more common in certain groups

• Genetics — Certain gene changes raise risk; the disease can run in families in a small number of cases

• Environment — Possible triggers include certain viruses, medicines, drugs, and repeated workplace exposure to harmful substances or chemicals — though most people have no identified trigger

• Other autoimmune disease — Rheumatoid arthritis, lupus, and Sjogren syndrome may occur alongside scleroderma

Infographic: the main signs and symptoms of scleroderma and its most serious complications.

What Are the Possible Complications?

Scleroderma complications range from mild to serious and can affect the fingertips, lungs, kidneys, heart, teeth, digestive system, and joints. The seriousness depends on which parts of the body the disease involves.

At the fingertips, Raynaud's phenomenon can become so severe that the restricted blood flow permanently damages the tissue, causing pits or skin sores — and in some people, the fingertip tissue may die. In the lungs, scarring can limit breathing and exercise tolerance, and high blood pressure can develop in the arteries that supply the lungs. The kidneys face a serious complication called scleroderma renal crisis, which involves a sudden increase in blood pressure and rapid kidney failure; prompt treatment of this condition is important to preserve kidney function.

The heart is affected through tissue scarring that increases the risk of irregular heartbeats and heart failure, and through inflammation of the sac surrounding the heart. Facial skin tightening can make the mouth smaller and narrower, making it hard to brush teeth or have them professionally cleaned — and because people with scleroderma often don't make typical amounts of saliva, the risk of dental decay increases further.

• Fingertips — Pits, skin sores, and in severe cases death of fingertip tissue from restricted blood flow

• Lungs — Scarring that limits breathing; high blood pressure in the lung arteries

• Kidneys — Scleroderma renal crisis — sudden blood pressure rise and rapid kidney failure

• Heart — Irregular heartbeats, heart failure, and inflammation of the sac around the heart

• Teeth — Smaller, narrower mouth; less saliva; higher risk of dental decay

• Digestive system — Heartburn, swallowing difficulty, cramps, bloating, constipation or diarrhea, and nutrient malabsorption from bacterial overgrowth

• Joints — Tight skin restricts flexibility and movement, particularly in the hands

How Is Scleroderma Diagnosed?

Because scleroderma can take so many forms and affect so many different areas of the body, it can be difficult to diagnose. Most people first bring their symptoms to a family healthcare professional and may then be referred to a rheumatologist — a doctor who specializes in arthritis and other diseases of the joints, muscles, and bone. Because the disease can affect many organ systems, several medical specialists may be involved.

After a thorough physical exam, the healthcare professional may suggest blood tests to check for elevated levels of certain antibodies made by the immune system. Other blood tests, imaging, or organ function tests may follow. These tests help determine whether the digestive system, heart, lungs, or kidneys are affected.

• Physical exam — Thorough examination of skin, joints, and organ function

• Antibody blood tests — Check for elevated levels of specific antibodies made by the immune system

• Additional blood tests — Help identify organ involvement

• Imaging and organ function tests — Determine whether the digestive system, heart, lungs, or kidneys are affected

Infographic: the diagnostic path for scleroderma, the available treatment options, and the five daily self-care habits that help manage the disease.

How Is Scleroderma Treated?

There is no treatment that can cure or stop the overproduction of collagen that happens in scleroderma. But a variety of treatments can help control symptoms and prevent complications.

Medicines

Because scleroderma can affect so many parts of the body, the choice of medicine depends on the symptoms:

• Medicines that dilate blood vessels. Blood pressure medicines that dilate blood vessels may help treat Raynaud's phenomenon.

• Medicines that suppress the immune system. Immunosuppressants such as those taken after organ transplants may help reduce the progression of some scleroderma symptoms, including skin thickening and worsening lung damage.

• Medicines that reduce digestive symptoms. Pills that reduce stomach acid can relieve heartburn. Antibiotics and medicines that help move food through the intestines may reduce bloating, diarrhea, and constipation.

• Vaccinations. Recommended vaccines are important to protect people with scleroderma from infectious diseases — talk with the healthcare professional about vaccines for influenza, pneumonia, shingles, HPV, COVID-19, and RSV.

• Medicines that relieve pain. If over-the-counter pain relievers don't help enough, prescription pain medicines may be suggested.

Therapies

Physical or occupational therapists can help improve strength and mobility and maintain independence with daily tasks. Hand therapy may help prevent hand stiffness, also called contractures.

Surgical and Other Procedures

Stem cell transplants might be an option for people with serious symptoms that haven't responded to more common treatments. If the lungs or kidneys have been badly damaged, organ transplants might be considered.

What Self-Care Helps With Scleroderma?

Daily habits play a real role in managing scleroderma symptoms. Five self-care areas stand out.

Stay active. Exercise keeps the body flexible, improves circulation, and eases stiffness. Range-of-motion exercises keep the skin and joints flexible — and this is especially important early in the disease course.

Protect the skin. Care for dry or stiff skin with lotion and sunscreen used regularly, and avoid hot baths and showers as well as strong soaps and household chemicals, which can irritate and further dry the skin.

Don't smoke. Nicotine causes blood vessels to contract, making Raynaud's phenomenon worse. Smoking can also cause permanent narrowing of the blood vessels and cause or worsen lung problems.

Manage heartburn. Avoid foods that cause heartburn or gas, and avoid late-night meals. Elevating the head of the bed keeps stomach acid from backing up into the esophagus during sleep, and antacids may relieve symptoms.

Protect against the cold. Wear warm mittens whenever the hands are exposed to cold — even when reaching into a freezer. Keeping the core body warm helps prevent Raynaud's phenomenon; outdoors, warm boots, face and head coverings, and layers all help.

• Stay active — Keeps body flexible, improves circulation, eases stiffness

• Protect skin — Lotion and sunscreen counter dryness; avoid hot water and harsh chemicals

• Don't smoke — Nicotine worsens Raynaud's; smoking damages vessels and lungs

• Manage heartburn — Avoid trigger foods, skip late meals, elevate the head of the bed

• Stay warm — Mittens and layers prevent Raynaud's attacks

How Can You Cope and Prepare for an Appointment?

As with other chronic diseases, living with scleroderma can bring anxiety and worry. The practical advice is to maintain typical daily activities as best you can, pace yourself, get needed rest, stay connected with friends and family, and continue enjoyable hobbies. Denial, anger, and frustration are common, and mental health professionals such as therapists or behavior psychologists can help with perspective, relaxation techniques, and coping skills. Joining a support group is often a good approach too.

When preparing for an appointment, plan ahead. Bring detailed descriptions of all symptoms, a list of all medicines and supplements with dosages, and written questions for the healthcare professional — such as what tests or treatments may be needed. Expect questions like "Do your fingers change colors when you get cold?", "Do you regularly experience heartburn or swallowing problems?", and "Have you noticed any skin tightening or thickening?"

When Should You See a Doctor?

See a healthcare professional if you notice hardening or tightening of the skin that spreads beyond a localized patch — especially on the fingers, hands, feet, or face — or if cold or stress repeatedly makes your fingers turn white, blue, gray, or red. Heartburn and difficulty swallowing, unexplained shortness of breath, or a sudden spike in blood pressure also deserve prompt evaluation, because scleroderma can involve the digestive tract, lungs, heart, and kidneys, and early treatment of complications like renal crisis is important.

Conclusion: No Cure Yet — But Plenty of Ground to Hold

Scleroderma is a disease of too much collagen, and no treatment can yet stop that overproduction. But the picture is far from hopeless: medicines that dilate blood vessels, suppress the immune system, ease digestion, and relieve pain — plus physical therapy and five daily self-care habits — can control symptoms, slow progression, and protect the organs that matter most. The people who do best are those who stay active, keep their body warm and skin protected, and work with a team that tracks the lungs, heart, and kidneys over time.

If you or a loved one are dealing with scleroderma, start with a rheumatologist — and ask about keeping range of motion early, staying on top of vaccinations, and when more aggressive options like stem cell therapy make sense.

This guide is for general education only and is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a qualified healthcare provider with any questions about a medical condition.

Frequently Asked Questions

What is scleroderma, in simple terms?

Scleroderma — also called systemic sclerosis — is a group of rare diseases in which the body produces too much collagen, the protein that makes up connective tissue. The excess collagen builds up in tissues, causing the skin to harden and tighten, and can also affect blood vessels, the digestive tract, lungs, heart, and kidneys.

What are the first signs of scleroderma?

The first signs usually appear on the fingers, hands, feet, and face: skin that hardens and tightens, sometimes with early swelling, itchiness, and a shiny appearance. Raynaud's phenomenon — fingers turning white, blue, gray, or red in the cold — is also very common and may appear early.

Is scleroderma curable?

No. There is no treatment that cures scleroderma or stops the overproduction of collagen. But medicines can control symptoms, slow progression in areas like the skin and lungs, and prevent complications — and daily self-care makes a real difference.

Who is most likely to get scleroderma?

Anyone can get scleroderma, but it is more common in women and typically begins between ages 30 and 50. Black adults often have earlier onset and are more likely to have more skin involvement and lung disease. Genetics, possible environmental triggers, and other autoimmune conditions also influence risk.

What is the difference between limited and diffuse scleroderma?

Limited and diffuse refer only to the degree of skin involvement — limited means less skin is affected, diffuse means more. Both types can involve the blood vessel and internal organ symptoms that are part of the disease. A separate form called localized scleroderma (morphea) affects only the skin.

Why do my fingers turn white or blue in the cold?

This is Raynaud's phenomenon, caused by an exaggerated contraction of the small blood vessels in the fingers and toes in response to cold or emotional stress. The digits may feel painful or numb and turn white, blue, gray, or red. It is common in scleroderma but also occurs in people without the disease.

How do doctors diagnose scleroderma?

Because the disease takes many forms, diagnosis starts with a thorough physical exam and blood tests that check for elevated levels of certain immune-system antibodies. Other blood tests, imaging, and organ function tests help determine whether the digestive system, heart, lungs, or kidneys are affected.

What self-care steps help the most with scleroderma?

Stay active with range-of-motion exercises, protect dry skin with lotion and sunscreen while avoiding hot water and harsh chemicals, don't smoke (nicotine worsens Raynaud's and damages lungs), manage heartburn by avoiding trigger foods and elevating the head of the bed, and keep the body warm with mittens and layers in the cold.

References

• [1] Scleroderma — Symptoms & causes (updated June 15, 2024)

• [2] Scleroderma — Diagnosis & treatment (updated June 15, 2024)

Additional references consulted

• National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS): Scleroderma In-Depth

• Goldman-Cecil Medicine, 27th edition (Elsevier, 2024)

• Ferri FF. Ferri's Clinical Advisor 2024 (Elsevier, 2024)

• Weedon's Skin Pathology, 5th edition (Elsevier, 2021)

• UpToDate: Clinical manifestations and diagnosis of systemic sclerosis (scleroderma) in adults; Cardiac manifestations of systemic sclerosis in adults

• Scleroderma Foundation: Coping with Scleroderma

• American College of Rheumatology: Guidelines for vaccination in patients with rheumatic and musculoskeletal diseases