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.
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
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
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
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
The Choctaw Scleroderma Foundation
Attention: Alicia Seyler,
Rural Route Box 437
Eagletown, OK 74734.
You can reach them by email at
This article first appeared in the Native Times