Scleroderma is a rare but potentially life-threatening autoimmune disease that affects the skin and connective tissue of the body.

Although it is a serious condition that can cause significant discomfort and disability, there are many misconceptions about the disease that can lead to confusion and anxiety. In this article, we’ll take a closer look at some of the most common misconceptions about scleroderma and provide helpful information for patients and their families.

Myth #1: Scleroderma is Contagious

One of the most persistent myths about scleroderma is that it is contagious. However, this is completely false. Scleroderma is an autoimmune disease, meaning that it occurs when the body’s immune system attacks its own tissues.

The disease cannot be transmitted from person to person through contact, nor can it be caught from exposure to contaminated surfaces or fluids. Those who are diagnosed with scleroderma should not fear that they are putting others at risk.

Myth #2: Scleroderma is Always Fatal

Another common misconception is that scleroderma is always fatal. While it is true that the disease can be life-threatening, many people with scleroderma are able to manage their condition and lead fulfilling, productive lives.

The prognosis for individuals with scleroderma varies widely depending on the type and severity of the disease, as well as other factors such as age and overall health. With proper treatment and management, many people with scleroderma are able to live for many years with the disease.

Myth #3: Scleroderma Only Affects the Skin

While scleroderma is known for causing changes in the skin, it can also affect other organs and systems in the body, including the heart, lungs, kidneys, and digestive system.

In some cases, scleroderma can cause significant damage to these organs, leading to serious complications and disabilities. It is important for individuals with scleroderma to receive regular medical care and monitoring to detect and address any issues that may arise.

Myth #4: Scleroderma Only Affects Women

Although scleroderma is more common in women than men, it can affect individuals of any gender.

In fact, men with scleroderma tend to have a more severe form of the disease than women, and may have a higher risk for certain complications such as pulmonary arterial hypertension. It is important for individuals of all genders to be aware of the risks and symptoms of scleroderma.

Myth #5: Scleroderma is Always Visible on the Skin

While the most common form of scleroderma, known as systemic scleroderma, causes visible changes in the skin such as thickening and hardening, other forms of the disease may not show any signs on the skin at all.

For example, individuals with limited scleroderma may only experience symptoms in their hands and face, without any visible signs of the disease on other parts of the body. It is important for individuals to be aware of the possible symptoms of scleroderma, even if they do not show any visible changes on their skin.

Myth #6: Scleroderma is an Old Person’s Disease

Although scleroderma is more common in individuals over the age of 40, it can occur at any age, including in children and young adults. In fact, some forms of scleroderma, such as juvenile scleroderma, are specifically related to childhood onset.

It is important for individuals of all ages to be aware of the symptoms and risks associated with scleroderma, and to seek appropriate medical care if they suspect they may have the disease.

Myth #7: Scleroderma is Easy to Diagnose

Diagnosing scleroderma can be challenging, as the disease can have a wide range of symptoms and can affect different parts of the body in different ways.

In many cases, diagnosis requires a combination of clinical evaluation, laboratory tests, imaging studies, and other diagnostic tools. It is important for individuals who suspect they may have scleroderma to seek evaluation by a qualified medical professional who is familiar with the disease.

Myth #8: There is No Effective Treatment for Scleroderma

Although there is no cure for scleroderma, there are a variety of treatments available that can help manage symptoms, prevent complications, and improve quality of life.

Treatment options may include medications, such as immunosuppressants and vasodilators, physical therapy, and lifestyle modifications. In some cases, surgery may be necessary to address complications such as lung or heart damage. It is important for individuals with scleroderma to work closely with their medical team to develop a treatment plan that meets their individual needs.

Myth #9: Scleroderma is Always the Same for Everyone

One of the most important things to remember about scleroderma is that it can vary widely from person to person.

Some individuals may experience only mild symptoms, while others may have a more severe form of the disease that affects multiple organs and systems. In addition, the course of the disease can be unpredictable, with periods of exacerbation and remission.

It is important for individuals with scleroderma to seek ongoing medical care and monitoring, and to be prepared for changes in their symptoms or disease activity.

Myth #10: Scleroderma Cannot be Managed with Self-Care Strategies

Although scleroderma is a complex and potentially serious disease, there are many self-care strategies that can help individuals manage symptoms and improve their overall health and well-being.

These strategies may include getting regular exercise, eating a balanced and healthy diet, avoiding smoking and alcohol use, and practicing stress management techniques such as meditation or yoga. Working closely with a qualified medical team can help individuals identify and implement effective self-care strategies that are tailored to their individual needs.