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Scleroderma Facts Vs. Fiction

Queen Latifah with mother Rita Owens
Queen Latifah with mother, Rita Owens; Photo: Frazer Harrison/Getty Images

Queen Latifah looks up to her mother, Rita Owens. ” In a recent PSA for the American Heart Association, Queen Latifah describes that her mother was diagnosed in 2013 with scleroderma, an incurable autoimmune disease that caused scar tissue to build up in her lungs, requiring her to be on oxygen around the clock.

See If You Qualify for a Local Scleroderma Research Study!

Owens, like many others, may not have been aware of the many ways systemic scleroderma can affect the body’s organs. With scleroderma affecting an estimated 300,000 Americans and African Americans being diagnosed more frequently and at an earlier age than other ethnic groups, it’s important to know the facts.

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Myth: Scleroderma is a disease that only affects the skin.

Truth: Scleroderma is primarily characterized by thickening of the skin, but this chronic connective tissue disease can affect the blood vessels and internal organs in addition to the skin. Localized scleroderma affects certain parts of the body (usually the skin), but with systemic scleroderma the entire body can be affected – skin, kidneys, digestion, joint, teeth, lungs, heart  and Raynaud’s  Phenomenon.

Myth: Scleroderma is a genetic disease.

Truth: Scientists do not know what causes scleroderma, but researchers do not believe it is passed on through  genes. According to the Scleroderma Foundation, “Most patients do not have any relatives with scleroderma and their children do not get scleroderma. Research indicates that there is a susceptibility gene, which raises the likelihood of getting scleroderma, but by itself does not cause the disease.”

READ: Systemic Scleroderma: Treatments for the 8 Major Symptoms

Myth: Scleroderma only happens to “old” people.

Truth: Scleroderma can develop in every age group, from infants to the elderly. Typically, onset is between the ages of 25-55. Localized scleroderma is more common in children and systemic scleroderma is more common in adults. Women are diagnosed more than men and as mentioned earlier, African Americans are diagnosed with systemic scleroderma more than other groups.


Myth: It’s easy to diagnose scleroderma. 

Truth: It’s difficult to diagnose scleroderma because it shares many symptoms with other autoimmune conditions. Noticing a rapid thickening of the skin can make it easier to properly diagnose, but often scleroderma can go undiagnosed or even misdiagnosed.

Myth: You can “catch” scleroderma from someone else. 

Truth: Scleroderma is not contagious.

Myth: Scleroderma can be cured

Truth: Unfortunately, scleroderma is not curable. However, there are treatments to help manage symptoms and reduce progressive damage. Treatment varies from person to person.

If you think that you have scleroderma, it’s important to see a doctor right away to determine whether you have the disease.

If you have scleroderma you should begin to receive treatment as soon as possible.

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