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June is Scleroderma Awareness Month

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MADISON, Wis. – The Choctaw Scleroderma Foundation, a newly formed American Indian health organization, has announced that June is Scleroderma Awareness Month.

“This announcement is of particular importance to Native communities due to the curiously high rates of rheumatic disease within our populations,” said Aimee Angle-Zahn, a Cornell Medical College student and member of the Eastern Band of Cherokee Indians. “Scleroderma is such an emotionally and physically isolating disease; we want folks to know there are people who understand their struggle and we’re here to help.”

The Choctaw Scleroderma Foundation was formed as an Oklahoma 501(c)3 organization in May of this year by Angle-Zahn along with Taloa Gibson and Alicia Seyler, both members of the Choctaw Nation of Oklahoma. Gibson and Seyler’s grandmother died from a fatal form of scleroderma.

“I’ve seen firsthand how debilitating and deadly scleroderma can be. I’d like to help other families who are coping with this disease and to provide them with better treatment options,” said Seyler.

Scleroderma is an autoimmune disorder that affects Choctaws in southeastern Oklahoma at a rate higher than any other population in the world. A cousin to lupus, scleroderma is characterized by a hardening of skin, lung and kidney fibrosis, joint pain and fatigue. Scleroderma has long been called the disease that “turns your body to stone.”

The Choctaw Scleroderma Foundation was established to serve as a resource to American Indian communities battling rheumatic diseases such as scleroderma, but also other rheumatic diseases like lupus, rheumatoid arthritis and vasculitis, particularly Wegner’s Disease and Kawasaki’s Disease – all of which have drastically high prevalence rates in American Indian communities.

Partnering with Harvard Medical School researchers and scientists, the Choctaw Scleroderma Foundation hopes to create a best practices model for private health care in American Indian communities.

Dr. Laurie Glimcher is the Irene Heinz Given Professor of Immunology and Infectious Diseases at Harvard School of Public Health and a professor of medicine at Harvard Medical School. She is enthusiastic about the venture.

“Providing better medical options for people in the Choctaw Nation with scleroderma and other rheumatologic diseases is an admirable goal – I am honored to be a part of this organization,” Glimcher said.

For more information about this organization, write the Choctaw Scleroderma Foundation, attention Alicia Seyler, Rural Route Box 437, Eagletown, OK 74734; or via e-mail at choctawscleroderma@gmail.com.