Unpacking Misconceptions About Scleroderma

Scleroderma is a mysterious condition. The disease is uncommon and causes a vast range of symptoms that make it hard to identify — a combination leading to myths and misconceptions.

Misconceptions diminish the quality of life for people diagnosed with scleroderma. Whether or not you have scleroderma, misconceptions affect how you interact with others.

Behnam Khaleghi, MD, at Pacific Rheumatology Medical Center, specializes in all aspects of scleroderma, from providing exceptional care to explaining the facts. Here, he unpacks six common misconceptions.

Myth #1: Scleroderma is contagious

Many people avoid patients with scleroderma when they see skin symptoms. You need to know that you can’t catch the disease because scleroderma is not contagious.

Scleroderma occurs when a person’s autoimmune system produces too much collagen, leading to inflammation and patches of thick, hardened skin.

Most people have limited scleroderma, with skin tightening on their hands, forearms, calves, and face. However, about one-third also have skin symptoms on their chest, upper arms, and legs (diffuse scleroderma).

Myth #2: Scleroderma only affects your skin

Scleroderma can affect any organ inside the body, including your heart, lungs, kidneys, digestive system, muscles, and blood vessels. This type, which is called systemic scleroderma or systemic sclerosis, can occur with or without skin involvement.

Myth #3: Scleroderma is in your head

Few health problems are as challenging for patients as those that don’t cause symptoms people can see. Systemic scleroderma without skin symptoms is an invisible disease. 

Unfortunately, that makes others doubt you have a problem and wonder why you feel sick or need to take time away from work.

While it would be great if everyone understood, they often don’t. The only way to overcome this issue is by explaining the basics of your disease, which you may (or may not) want to do, depending on the circumstances.

Myth #4: Scleroderma is genetic

Genetics may increase your risk of developing scleroderma. However, it’s not currently considered an inherited condition. Most people diagnosed with scleroderma don’t have a family history of the disease.

Myth #5: Raynaud’s means you have scleroderma

Raynaud’s phenomenon causes finger and/or toe discoloration (turning pale and then blue), numbness, and pain when your hands (or feet) are exposed to cold temperatures or you’re under stress.

These symptoms are one of the earliest signs of scleroderma, but Raynaud’s phenomenon can occur on its own or together with many other health conditions.

Myth #6: Scleroderma runs a predictable course

The symptoms you experience depend on the type of scleroderma. Since scleroderma can affect any organ and cause minor to life-threatening symptoms, no two people have the same experience.

Your symptoms may appear quickly and keep worsening. Or, your scleroderma may progress slowly.

Tightened skin may affect a small area or cover a large body area, even an entire limb. Extensive skin involvement affects your appearance and limits mobility.

Nearly everyone with systemic scleroderma has muscle aches and joint inflammation and pain. Some people may experience muscle weakness.

When systemic scleroderma decreases muscle function in your gastrointestinal tract, you may have heartburn, difficulty swallowing, and unpredictable bouts of stomach cramps, constipation, and diarrhea.

If the disease affects your heart or lungs, you develop shortness of breath, irregular heartbeats, heart failure, and lung fibrosis (scarred lung tissue).

All these variables make it crucial to seek help from Behnam Khaleghi, MD. As a rheumatology specialist, he can determine the cause of your symptoms and create a proactive treatment plan that eases your symptoms and promotes your health.

Early treatment helps limit the effect of scleroderma. Call Pacific Rheumatology Medical Center today or use online booking to request an evaluation of your symptoms or receive exceptional long-term care for scleroderma.

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