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Dr. Lisa Arkin speaks to how evidence-based, expert opinion-led consensus treatment plans for scleroderma can help change the way patients and providers approach the disease.
Scleroderma, or morphea as it is more commonly referred to in clinical circles, is a unique disease with dermatologic implications that distinguish it from other common inflammatory skin conditions.
Due to the rarity of the disease, scleroderma research has lacked the robust evidence gained from randomized controlled trials, and funding has been limited.
But what the disease lacks in funding it more than makes up for in attentive and determined health care providers such as Lisa Arkin, MD, member of the Society for Pediatric Dermatology, University of Wisconsin School of Medicine & Public Health / American Family Children's Hospital.
In an interview with HCPLive, Arkin spoke to how the mysteries surrounding pediatric scleroderma in particular are slowly being unraveled through early diagnosis and treatment.
It is a process that requires the appropriate medical and therapeutic strategies, as Arkin explained.
“When we prognosticate how patients will respond to therapy and what we can expect in terms of kind of the residual skin damage that remains, typically, as physicians, we're looking at markers of disease activity and disease damage,” Arkin said. “And that's really important to be able to distinguish because the active disease is what responds to medical therapy, (while) damage, unfortunately, does not. The sooner we diagnose a disease, when it's active, the less damage that accrues, the less footprint there will be in the skin that we have to deal with later.”
Markers for active disease activity, such as violaceous erythema, white sclerosis, and peripheral halos, have played a prominent role in determining what therapeutic options would be most effective in children with the disease.
Arkin noted how medical therapy may not ever solve the visual complications of morphia, though procedural options such as fat grafting and surgical reconstruction have been effective in managing linear disease and more extensive generalized scleroderma.
She added that evidence-based interventions pursued by organizations such as the Childhood Arthritis and Rheumatology Research Alliance (CARRA) have been critical in the development of consensus treatment plans for morphia and other rare disorders, adding that the consensus treatment plans are based on expansive review of the literature and consensus opinion from experts who treat morphia, and are actively modified as the translational data improves.
Likewise, felt that days of recognition such as World Scleroderma Day on June 29th were important in the recognition and celebration of patients with the disease, especially as it pertains to children.
“This day, and all of days where we celebrate patients who are affected by this disease, really shows that you aren't alone; we're a world of doctors, or a world of patients and knowing that you're not alone, in itself, I think can be a very empowering moment,” she said. “These patients do incredibly well with therapy, so just having that sense of optimism and hope and meeting other kids and patients and adults who are affected in itself, is about driving awareness, but also making kids feel less alone, less different, and then importantly, driving better translational research that will inform better treatments that are more targeted for patients who are affected.”
To hear more from Dr. Arkin, please watch the full video interview above.