understanding scleroderma

When D.K. began to feel shooting pain in her arms, she and her doctors thought it might be carpal tunnel. But a year later, the pain worsened, and her hands were starting to curl. Her rheumatologist examined her bloodwork, revealing a diagnosis of a disease she hadn’t heard of before – scleroderma.

“Scleroderma is an autoimmune disease that causes thickening or hardening of the skin due to excess collagen,” says Kristine Uramoto, M.D., rheumatologist at The Queen’s Medical Center and president of the Hawaii Rheumatology Society.

^{Dr. Kristine Uramoto}

“It’s a common misconception that scleroderma only affects the external skin,” says Lynn Muramaru, a volunteer support group leader for the Scleroderma Foundation of California, which also serves Hawaii. “Many of us in the Hawaii support group are affected by the hardening of the ‘skin’ that lines our internal organs. Lungs, digestive tract, kidneys, and our hearts are often affected.”

Doctors don’t know what causes scleroderma but, according to the Scleroderma Foundation of California, about 300,000 Americans live with the rheumatic disease. Localized scleroderma mainly affects the skin and sometimes bones and muscles. Systemic sclerosis, which also thickens skin internally, can potentially affect every major organ – this is when it becomes life threatening. There’s currently no cure for scleroderma.

“Treatment of scleroderma is generally focused on organ-specific symptoms,” says Dr. Uramoto. “For example, if a patient has Raynaud’s phenomenon – when a patient’s blood vessels, usually in the fingers or toes, react to cold temperatures or stress and cause decreased blood flow – medication for that symptom is prescribed.”

“Each specialist treats the affected organ, but it often takes a knowledgeable physician to put all the pieces together,” says Muramaru. “This is why disease awareness in an important part of the Scleroderma Foundation.”

Symptoms vary depending on its severity. “No two patients are going to have the same parts of their body affected in the same way,” says D.K. “We’re all different in how it presents and how it progresses, too.”

D.K. says for her, living with scleroderma means that fatigue and pain often dictate each day. “A good day is when the pain and tightness in my hands and arms are bearable,” says D.K., who medically retired from her job as a legal secretary.

Because scleroderma is a rare disease, D.K. found herself occasionally explaining her condition to providers.

“It’s not easy for physicians to diagnose,” says Muramaru. “Because scleroderma is a rare disease, many physicians have never managed the care of a scleroderma patient. Sometimes we find people have gone undiagnosed for years before finally receiving the treatment they need.”

To help spread scleroderma awareness, Uramoto and Muramaru’s organizations often work together to provide educational opportunities for both patients and providers to learn more about treating scleroderma patients in Hawaii. Daniel Furst, M.D., is a world-renowned scleroderma specialist and head of the Scleroderma Foundation’s medical advisory board; the Foundation arranged for him to speak to the Hawaii Rheumatology Society last year.

As a support group leader, Muramaru says the heart of her work is to educate a newly diagnosed patient and provide hope. “I’m a person who’s been living with scleroderma since 2000,” says Muramaru, who medically retired from HMSA. “Back then, the mortality rate was about 30% within the first five years. There were little to no treatments for scleroderma at that time. Through research, clinical trials, new medications, and early diagnosis, our ability to live healthier lives has increased significantly.”

“For anyone newly diagnosed, support groups have been so helpful,” says D.K. “Don’t lose heart.”

For more information about the Scleroderma Foundation of California, visit myscleroderma.org. Their support group for the Hawaii community meets every fourth Monday via Zoom. Visit the Hawaii Scleroderma Resources and Support page for more resources.

The Scleroderma Foundation of California and the Hawaii Rheumatology Society will host the HRS Annual Patient Conference on May 2, 2026. Please email Richele Thornburg for more information at richelethornburg@gmail.com.

Learn how Hawaii’s Lynn Muramaru is using her own diagnosis to provide a vital lifeline and support network for local patients.

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