Scleroderma is a rare and complex autoimmune disease that affects multiple organs and tissues in the body. Although it is not contagious, it can be debilitating and even life-threatening in extreme cases.

Unfortunately, many myths and misconceptions surround this disease, causing confusion and adding to the stigma that people with scleroderma often face.

Myth #1: Scleroderma is a type of skin disorder only

While scleroderma can indeed cause skin changes, it is more than just a skin disorder. Scleroderma is a multi-systemic disease, which means it can affect multiple organs and tissues in the body.

Depending on the type of scleroderma a person has, it can affect the lungs, heart, kidneys, digestive system, and blood vessels, among other areas.

Myth #2: Scleroderma only affects women

It is true that scleroderma affects more women than men, with a ratio of about 4 to 1. However, men can also develop scleroderma, and the disease can affect children as well.

In fact, juvenile scleroderma is a distinct form of the disease that affects children and teenagers.

Myth #3: Scleroderma is curable

At present, there is no cure for scleroderma. However, there are treatments available that can help manage symptoms and slow the progression of the disease. These may include medications, physical therapy, and lifestyle changes.

Early diagnosis and intervention are key to managing the disease.

Myth #4: Scleroderma is always fatal

While scleroderma can be a serious and life-threatening disease, it is not always fatal. Many people with scleroderma are able to manage their symptoms and lead fulfilling lives.

However, certain complications of the disease, such as severe lung or heart involvement, can be fatal.

Myth #5: Scleroderma is contagious

Scleroderma is not contagious and cannot be transmitted from one person to another. It is an autoimmune disease, which means the body’s immune system mistakenly attacks its own tissues.

While the exact cause of scleroderma is unknown, it is thought to be a combination of genetic, environmental, and immune system factors.

Myth #6: Scleroderma is a rare disease that most people have never heard of

While scleroderma is a rare disease, affecting an estimated 75,000 to 100,000 people in the United States, it is not unheard of.

In fact, many celebrities and public figures, such as actress Vivien Leigh and musician Phil Mickelson, have been diagnosed with scleroderma. However, because it is a complex and often misunderstood disease, raising awareness of scleroderma is important.

Myth #7: Scleroderma is always visible

While certain types of scleroderma, such as localized scleroderma, may cause visible skin changes, not all types do. Systemic scleroderma, for example, may not cause visible skin changes at first.

Rather, it may affect internal organs and blood vessels, causing symptoms such as shortness of breath, heart palpitations, and difficulty swallowing.

Myth #8: Scleroderma affects only older adults

While scleroderma is more common in older adults, it can affect people of any age. As mentioned earlier, juvenile scleroderma is a distinct form of the disease that affects children and teenagers.

In addition, some types of scleroderma, such as limited cutaneous systemic sclerosis, may be more common in younger adults.

Myth #9: Scleroderma is the same for everyone who has it

Scleroderma is a complex autoimmune disease that can differ greatly from person to person. There are two main types of scleroderma – localized scleroderma and systemic sclerosis – and several subtypes within each type.

Additionally, each person’s symptoms and disease course may vary based on factors such as age, sex, and overall health.

Myth #10: There’s nothing you can do if you have scleroderma

While there is no cure for scleroderma, there are things you can do to manage your symptoms and improve your quality of life. These may include medications, physical therapy, and lifestyle changes.

In addition, participating in clinical trials and staying informed about the latest research can help advance treatments for scleroderma and improve outcomes for people with the disease.

Conclusion

Scleroderma is a complex and often misunderstood autoimmune disease that can cause wide-ranging symptoms and affect multiple organs and systems in the body.

Dispelling the myths and misconceptions surrounding scleroderma is important in raising awareness and promoting understanding of this disease. With early diagnosis, appropriate treatment, and ongoing management, many people with scleroderma are able to manage their symptoms and lead fulfilling lives.