The Steffens Foundation seeks to support and promote research toward the treatment and cure of Scleroderma and Degos Disease. Of equal importance is our mission to promote awareness and understanding of these disorders, especially among healthcare professionals. Familiarity with the clinical presentation of these illnesses by frontline practitioners improves the likelihood of early recognition and diagnosis, as well as timely access to the specialized intervention necessary with rare and ultra rare diseases.
The purpose of this page is to enhance understanding of Scleroderma and Degos Disease for emerging and practicing healthcare professionals. Some of the content may have originally been intended for the support of individuals with these illnesses. Some of the other resources available on this page have a twofold purpose; educating those with the conditions, as well as educating their loved ones, as well as healthcare providers who are interested in the subject matter.
It is our goal to provide excellent educational content for all individuals desiring to learn about Scleroderma, Degos Disease, and related illnesses. We hope you find the content on this page helpful in your pursuit of this goal.
Watch the Fighting Degos Disease video to learn about Ernie DuPont's hard-fought battle against Degos.
Degos disease is an ultra-rare vascular disease presenting as skin lesions (porcelain plaques) that appear:
Degos disease has two forms:
Approximately 1/3 of patients eventually progress to systemic disease.
Untreated systemic Degos disease may result in GI perforations, sepsis, damage to the lining around the lungs (pleura), and strokes.
Potential for overlap with Degos disease can be found in individuals with scleroderma, dermatomyositis, and lupus. Better understanding of Degos disease may lead to improved therapies and greater insight into the vascular aspect of these other disorders.
Steffens Scleroderma Foundation
P.O. Box 38037
Albany, NY 12203