The nonprofit Scleroderma Foundation reports that about 300,000 people in the United States contend with this difficult and sometimes debilitating condition. Scleroderma typically involves the skin but can also affect a range of other body systems, including the muscles, joints, digestive tract, heart, lungs, and kidneys.

“With scleroderma,” explains Dr. Britt Kimmins, “the body’s collagen production goes into overdrive. On the skin, this extra collagen manifests as hard patches. However, if the condition is systemic, the overproduction also takes place internally, affecting organs, tightening them and limiting their function.”

Though affecting all ages, most cases start between the ages of 30 and 50. The exact cause is not known, but vascular alterations, autoimmune activity, and defects in collagen synthesis may play a role. Genetics may play a role as well. Children with the condition are more likely to have a relative with the disease.

Race may be a factor in the type of scleroderma seen: African Americans have higher rates of systemic scleroderma: Women are affected more than men. Finally, the environment may play a role, as scleroderma has been linked to exposure to substances such as silica dust.

“Dermatologists are often the first specialist to diagnosis the patient,” notes Dr. Britt Kimmins. “And early diagnosis is key to limiting damage.”

Left untreated, hardened patches of skin can result in restricted movement, and in some cases, skin patches will extend to underlying tissue. The more serious systemic scleroderma requires treatment to limit the involvement of internal organs.

“There is no single test for scleroderma,” explains Dr. Britt Kimmins. “Diagnosis requires careful evaluation, including a thorough patient history, skin biopsy, blood tests, and imaging. Often dermatologists and rheumatologists work together to formulate a treatment plan.

After the diagnosis, is made, depending on disease severity, a team of specialists can coordinate treatment. “There is no ‘cure’ for scleroderma,” says Dr. Britt Kimmins. “But prompt treatment can limit permanent damage and help maintain quality of life.”

With that in mind, Dr. Britt Kimmins offers the following suggestions.

5 Tips to Manage Scleroderma

1. Don’t wait to see your dermatologist: “The first signs,” explains Dr. Britt Kimmins, “may be hardened areas of skin and discoloration.” Seeing a dermatologist can lead to a diagnosis. Then, interventions can take place: skin treatment, physical and occupational therapy to support movement, and specialists in the case of systemic involvement, which may require immune treatments.”

2. Surface changes may go deeper: “Certain skin changes can provide clues that aid in the diagnosis,” advises Dr. Britt Kimmins. “With localized scleroderma, there are often dark and light tone changes. But a salt-and-pepper pattern may indicate that organs are affected. Similarly, the onset of Raynaud’s syndrome – where extremities go numb and lose color due to cold or stress – can indicate organ involvement.”

3. Light therapy holds a spectrum of benefits: “Different kinds of phototherapy can benefit scleroderma,” notes Dr. Britt Kimmins. For changes in appearance, intense pulsed therapy can treat darkened skin, and laser therapy can address broken blood vessels and improve skin texture. Narrowband UVB therapy can treat surface skin patches, and UVA therapy can address deeper levels of involvement. PUVA treatment – psoralen medication and UVA therapy have been found to be effective in treating hardened skin. And extracorporeal photopheresis, which involves treating the patient’s white blood cells with PUVA, is an emerging treatment for systemic scleroderma.

4. Elevate your skincare routine: “Scleroderma can cause painful calcium deposits and sores, as well as skin dryness and fragility, ” emphasizes Dr. Britt Kimmins. “A gentle skincare routine can help prevent further damage and infection: Gentle cleansing, effective moisturizing, and keeping the skin warm to support circulation, are important in slowing down disease progression. And patients should avoid any collagen-boosting or tightening beauty treatments.”

5. Research matters: “New treatments for scleroderma are emerging,” notes Dr. Britt Kimmins. “As stated above, a multi-specialty approach in the treatment of scleroderma provides the best chance for improvement and control.”                                                   

Allison Britt Kimmins, MD, MPH, is board-certified in dermatology. Advanced Dermatology P.C. and the Center for Laser and Cosmetic Surgery (New York, New Jersey & PA) is one of the leading dermatology centers in the nation, offering highly experienced physicians in the fields of cosmetic and laser dermatology as well as plastic surgery and state-of-the-art medical technologies.