[BearwWthoutBorders] Rare disease [Scleroderma] stalks Oklahoma Choctaw Indians

Hunter Gray hunterbadbear at earthlink.net
Fri Jun 23 15:01:48 EDT 2006


NOTE BY HUNTER BEAR:

Scleroderma and SLE [systemic lupus] are in many ways sibling auto-immune
diseases, genetic in nature, and without cure.  I have a friend [a poet who
Beba knows also] -- a White Earth Chippewa --whose daughter has scleroderma.
One of the more interesting comments I've heard recently from a
knowledgeable person about both of these deadly diseases is that, if you
have one and last long enough, you can sometimes get the other as well.  H


Rare disease stalks Oklahoma Choctaw Indians
Did you know June is National Scleroderma Month?

TULSA OK
By Louis Gray 6/20/2006   [Native American Times]

Native Americans rank high in so many negative socio-economic indicators
that it's hard to keep up with all of the challenges Indian people face each
day.

But Oklahoma Choctaw Indians residing in the southeastern section of the
state face a disease that 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 illness 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 that
"turns your body to stone," according to officials with the Choctaw
Scleroderma Foundation.

"I've seen first hand 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 Alicia Seyler, co-founder of the
foundation, which is partnering with Harvard Medical School researchers and
scientists to create a best practices model for private healthcare in
American Indian communities.

Foundation officials say 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, a change in skin
color, swelling/puffiness in fingers/toes, skin that appears shiny, poor
blood flow to extremities and digestive heart, lung and kidney problems. It
is slow, painful and, up to now, there has been way to stem the terrible
symptoms.

Among sufferers it is known that their body produces 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. 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, 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,
revealed 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 is tied
more to families than the Choctaw people as a whole.

The Scleroderma foundation is a resource to American Indian communities
battling this terrible disease. They also are knowledgeable on similar
maladies like Lupus, Rheumatoid Arthritis, Vasculitis, Wegner's Disease and
Kawasaki Disease, all of which afflict Indian people in dramatically high
numbers.

The 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 a lone.
Aimee Angle-Zahn, Taloa Gibson and 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 seek to eradicate this
disease we must all support research conducted by groups like the foundation
to search for a cure and, in the near term, alleviate suffering.

Medical experts agree.

"The Choctaw Scleroderma Foundation is a wonderful step forward towards
understanding why this devastating rheumatologic disease afflicts so many
people in the Choctaw Nation. 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," said
Laurie Glimcher M.D., the Irene Heinz Given Professor of Immunology and
Infectious Diseases at Harvard School of Public Health. She is also a
professor at Harvard Medical School.

For more information about this organization, call or write: The Choctaw
Scleroderma Foundation attention: Alicia Seyler, Rural Route Box 437
Eagletown, OK, 74734. You can reach them at choctawscleroderma at gmail.com.



HUNTER GRAY  [HUNTER BEAR/JOHN R SALTER JR]   Mi'kmaq /St. Francis
Abenaki/St. Regis Mohawk
Protected by Na´shdo´i´ba´i´
 and Ohkwari'

Check out our massive social justice website:  www.hunterbear.org

Honored with The Elder Recognition Award by Wordcraft Circle of Native
Writers and Storytellers:
http://www.hunterbear.org/elder_recognition_award_for_2005.htm

In our Gray Hole, the ghosts often dance in the junipers and sage, on the
game trails, in the tributary canyons with the thick red maples, and on the
high windy ridges -- and they dance from within the very essence of our own
inner being. They do this especially when the bright night moon shines down
on the clean white snow that covers the valley and its surroundings.  Then
it is as bright as day -- but in an always soft and mysterious and
remembering way. [Hunter Bear]






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