Scleroderma: Understanding the Condition and How to Manage It

At Askdoctor.ai, we understand that receiving a diagnosis like scleroderma can feel overwhelming and isolating. The uncertainty, the physical symptoms, and the lifestyle changes can all be incredibly difficult to navigate. That’s why we’ve created this content to offer you clarity, support, and reassurance. Whether you’re newly diagnosed, supporting a loved one, or managing ongoing symptoms, our goal is to help you make informed decisions and feel empowered in your journey with scleroderma.

If you’ve just been diagnosed with scleroderma—or you’re trying to understand what a loved one is going through—you might be feeling uncertain, even a little lost. That’s completely normal. Scleroderma is a rare autoimmune disease, and while it’s not always life-threatening, it can have a real impact on daily life.

In the United States, an estimated 300,000 people live with some form of scleroderma. The disease primarily affects women, especially those between the ages of 30 and 50. While it’s a serious condition, many people can manage it effectively and lead fulfilling lives. This guide breaks down what you need to know—what causes it, how it’s treated, and how you can manage life with it day to day.

What Is Scleroderma?

Scleroderma (from the Greek words skleros, meaning hard, and derma, meaning skin) is a chronic autoimmune disease where the immune system mistakenly attacks the body’s connective tissue. This leads to an overproduction of collagen, a protein that provides structure to the skin and organs. When collagen builds up excessively, it causes thickening and hardening of the skin, and in more severe cases, affects internal organs such as the lungs, kidneys, and heart.

Types of Scleroderma

There are two main types of the disease:

• Localized Scleroderma – Primarily affects the skin and muscles. It does not usually affect internal organs and is often milder.
• Systemic Sclerosis – Affects the skin and internal organs. This form is more serious and is divided into:
  • Limited Cutaneous Systemic Sclerosis (lcSSc): Skin involvement is confined to hands, forearms, face, and feet. It progresses slowly and often includes Raynaud’s phenomenon.
  • Diffuse Cutaneous Systemic Sclerosis (dcSSc): Affects larger areas of the skin and can lead to rapid internal organ involvement.

What Causes Scleroderma

Scleroderma doesn’t have a single known cause, but most researchers agree that a mix of genetic and environmental factors plays a major role. According to the Mayo Clinic, several key triggers may contribute to its development:

• Genetics: While scleroderma doesn’t usually run in families, certain genes may increase your risk.
• Immune System Malfunction: Like many autoimmune conditions, scleroderma causes your immune system to mistakenly attack healthy tissues, leading to inflammation and excess collagen buildup.
• Environmental Exposures: Long-term contact with silica dust, solvents, or certain viral infections may trigger symptoms in people who are already genetically vulnerable.
• Hormones: Women are four times more likely to develop scleroderma than men, which suggests hormones might influence its onset.

Scleroderma isn’t contagious, and lifestyle habits like diet or stress do not directly cause it.

Recognizing the Symptoms of Scleroderma

Scleroderma looks different for everyone. Some people notice only skin-related symptoms, while others deal with serious issues affecting their internal organs. Early signs often appear gradually, so paying close attention to changes in your body is key.

Skin Changes

• Tight or Hardened Skin: Skin may feel shiny or stiff, especially on the hands, face, or forearms.
• Swelling and Puffiness: Fingers or hands may appear swollen, particularly in the morning.
• Thickened Skin Patches (Morphea): These patches can appear anywhere and often feel firm or waxy.

Circulation Problems

• Raynaud’s Phenomenon: This common early symptom causes fingers or toes to turn white, blue, or red in response to cold or stress.
• Fingertip Ulcers: Poor circulation can cause painful sores or wounds on the fingers.
• Tiny Red Spots (Telangiectasia): These broken blood vessels are often visible on the face, hands, or inside the mouth.

Internal Organ Involvement

• Digestive Issues: Problems like acid reflux, bloating, or difficulty swallowing may result from damage to the esophagus.
• Breathing Problems: If the lungs are involved, you might feel short of breath or develop a chronic cough.
• Heart Complications: Some people experience irregular heartbeats or inflammation around the heart.
• Kidney Crisis: Though rare, scleroderma can affect kidney function, which may cause sudden high blood pressure or organ failure.

The Johns Hopkins Scleroderma Center notes that lung involvement is now the leading cause of scleroderma-related deaths, making early diagnosis and treatment especially important.

Diagnosis: How Scleroderma Is Identified

Diagnosing scleroderma isn’t always straightforward. Since symptoms overlap with other autoimmune diseases, doctors use a combination of tools:

• Blood tests: Look for specific antibodies like anti-centromere or anti-Scl-70
• Skin biopsy: A sample may be taken to examine for thickening or fibrosis
• Pulmonary function tests: To check for lung damage
• Echocardiogram or ECG: To monitor heart health
• Kidney function tests: Especially in cases of systemic sclerosis

It’s essential to see a rheumatologist, a specialist trained in autoimmune and connective tissue disorders, for an accurate diagnosis.

Treatment Options for Scleroderma

Doctors have not yet found a cure for scleroderma, but many treatments actively help manage symptoms, prevent complications, and improve quality of life. The approach varies based on which organs the disease affects and how severe the symptoms are. For this reason, healthcare providers create highly personalized treatment plans, often involving a team of specialists.

Medications That Help

Doctors may prescribe a combination of drugs to reduce inflammation and slow down the disease:

• Immunosuppressants such as methotrexate or mycophenolate mofetil are commonly used to reduce immune system overactivity and slow tissue damage.
• Anti-fibrotic medications like nintedanib have been FDA-approved to treat interstitial lung disease, a serious complication of systemic sclerosis.
• For circulation issues like Raynaud’s phenomenon, calcium channel blockers such as nifedipine help open blood vessels and improve blood flow.
• To ease acid reflux, which is common in scleroderma, proton pump inhibitors (PPIs) such as omeprazole or pantoprazole are often recommended.
• Pain relievers and non-steroidal anti-inflammatory drugs (NSAIDs) can help manage joint and muscle pain.

Supportive Therapies

Non-drug therapies can also make a big difference:

• Physical therapy helps maintain flexibility and joint function.
• Occupational therapy can assist with hand mobility and daily tasks.
• Pulmonary rehabilitation may benefit those with lung involvement.
• Routine monitoring, especially of lung and kidney function, helps catch complications early.

Working with an experienced rheumatologist and a multidisciplinary care team is key to creating a treatment plan that supports your long-term well-being.

Lifestyle Adjustments and Daily Management Tips

Managing scleroderma goes beyond medication. Lifestyle changes can make a real difference in controlling symptoms and staying healthy.

Skin Care

• Use thick, unscented moisturizers to prevent cracking and tightness
• Avoid harsh soaps and cold weather exposure (wear gloves, layer clothing)
• Apply sunscreen daily — UV rays can trigger flares

Diet and Nutrition

• Eat small, frequent meals if digestion is difficult
• Avoid spicy or acidic foods that worsen reflux
• Incorporate anti-inflammatory foods like fatty fish, leafy greens, and berries

Exercise and Mobility

• Engage in low-impact exercise (yoga, walking, swimming) to stay mobile
• Stretch regularly to keep joints flexible and reduce stiffness
• Consult a physical therapist for a personalized plan

Mental and Emotional Health

Living with a chronic illness can take an emotional toll. Don’t hesitate to:

• Join a support group such as the Scleroderma Foundation’s online community
• Speak to a mental health professional familiar with chronic illness
• Practice stress-reduction techniques like meditation or deep breathing

Real-Life Experiences: Stories of Strength

Nicola Whitehill: Living Beyond the Odds

Nicola Whitehill, diagnosed with diffuse systemic sclerosis (a severe form of scleroderma) at 24, was given only 15 months to live. Fast forward to today, and she has defied the odds, living with the disease for over 25 years. Despite severe skin tightening, ulcers, and internal organ complications, Nicola’s story is one of resilience. She is an advocate for rare disease awareness, offering her experiences to help others living with scleroderma.

Read more about Nicola’s journey on The Sun.

Chanel’s Journey: A Personal Battle with Scleroderma

In the documentary “Dear Scleroderma,” Chanel shares her personal story of battling scleroderma. She opens up about the challenges of dealing with the physical, mental, and emotional toll of the condition. Chanel’s transparency and bravery in sharing her journey have provided hope and encouragement to others facing similar struggles. Her story highlights the importance of early diagnosis and access to a support network.

Watch Chanel’s inspiring story on YouTube

FAQs About Scleroderma

1. What is scleroderma?
   Scleroderma is a rare autoimmune disease characterized by the hardening and tightening of the skin and connective tissues. It can also affect internal organs, leading to various complications.​
2. What causes scleroderma?
   The exact cause is unknown, but it’s believed to involve a combination of genetic and environmental factors that trigger the immune system to attack the body’s tissues.​
3. Is scleroderma curable?
   Currently, there is no cure for scleroderma. However, treatments are available to manage symptoms and slow disease progression.​
4. Who is at risk of developing scleroderma?
   Scleroderma can affect anyone, but it’s more common in women aged 30 to 50. Certain genetic factors and environmental exposures may increase risk.​

Conclusion: Living with Scleroderma

Scleroderma may be a rare and complex disease, but it is not unbeatable. With advancements in research, earlier diagnosis, and more personalized treatment options, many people are living full, vibrant lives despite the challenges.

The key is staying proactive—building a care team, following your treatment plan, and adjusting your lifestyle to support your overall health. You don’t have to face it alone. There’s a community out there ready to support you, from healthcare providers to others walking the same path.

If you’ve been impacted by scleroderma, consider sharing your story in the comments below. You never know who might find hope in your words.

References:
Mayo Clinic
Johns Hopkins Scleroderma Center
Scleroderma Foundation
National Institutes of Health (NIH)
PubMed
U.S. Food & Drug Administration (FDA)