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Org->Social Services: Choctaw Scleroderma Foundation created

Posted on Wednesday, June 21 @ 02:25:28 CDT

AUTHOR: Louis Gray

The Choctaw Scleroderma Foundation was created as an Oklahoma 501 (c) 3 non-profit group in May of 2006 to help sufferers and their families to know they are not alone. Aimee Angle-Zahn, Taloa Gibson and Alicia Seyler are the founding members of this noble and needed organization. Seyler and Gibson's Grandmother died from a form of Scleroderma.

Stumble It!

They know what we all know; we need to do all we can before Scleroderma takes one more loved one. If we own this disease we must all support research conducted by groups like the Choctaw Scleroderma Foundation to search of a cure and in the near term how to alleviate suffering.

Native Americans rank high in so many negative socio-economic indicators it's hard to keep up with all of the challenges Indian people face each day. But for the Oklahoma Choctaw Indians of Southeastern section of the state they face a disease which seems to have them earmarked for unthinkable suffering.

Scleroderma is a disease which can in some cases cause a thickening, hardening or tightening of the skin, blood vessels and some times internal organs. The disease is chronic or in other words it can last a long and painful time. Oklahoma Choctaws suffer this terrible malady at the very highest rates of any ethnic class in the world. It is horrible disease which some say turns the afflicted "into stone."

There have been plenty of studies conducted in conjunction with Choctaw tribal hospitals, but at this point there is no cure.

This is disturbing because sufferers can have ulcers or sores on their fingers, loss of hair over affected areas of their body, change in skin color, swelling/puffiness in fingers/toes, skin appears shiny, usually skin creases disappear, poor blood flow to extremities and digestive, heart, lung and kidney problems. It is slow, painful and up to now has no way to stem its terrible symptoms.

Among sufferers it is known that their body produced too much of a protein called collagen. Researches theorize that excess collagen is deposited causing thickening and hardening.

As you can imagine the Choctaw know all too well how painful this disease can be to the afflicted and their families. But, they are not idle participants in the research and study of the disease which strikes them hardest and more often.

One study in combining modern day genetic marker research and centuries-old tribal records purports to have identified a chromosomal site associated with Scleroderma in Oklahoma Choctaws. The study was coordinated by the national Institute of Arthritis and Musculoskeletal and Skin Diseases Specialized Center of Research in Scleroderma at the University of Texas-Houston Health Science Center say genetic ties to five families dating back to the 1800's who are thought to be founders of the disease. The study claims the problem at least is tied more to families than the Choctaw people as a whole.

The newly formed Choctaw Scleroderma Foundation was created to serve as a resource to American Indian communities battling this terrible disease. They are joining the respected Harvard medical School to create a best practices model for private healthcare in Native American communities. They also are a resource on similar diseases like Lupus, Rheumatoid Arthritis, Vasculitis, Wegner's Disease and Kawasaki Disease which all afflict Indian people in dramatically high numbers.

For more information about this organization, please call or write to the foundation at:

The Choctaw Scleroderma Foundation
Attention: Alicia Seyler,
Rural Route Box 437
Eagletown, OK 74734.
You can reach them by email at choctawscleroderma@gmail.com.

SOURCE:

This article first appeared in the Native Times