The Choctaw Scleroderma Foundation Created in May of 2006 stands as a testament to the resilience and determination of the Choctaw Nation of Oklahoma. Born from a deep-seated need to address the disproportionately high prevalence of scleroderma within their community, the foundation emerged as a beacon of hope, support, and advocacy. This article delves into the origins, mission, and impact of this vital organization, shedding light on the challenges faced by those affected by scleroderma and the proactive steps being taken to combat this debilitating disease.
Genesis of a Foundation: A Response to a Silent Epidemic
The impetus for the Choctaw Scleroderma Foundation Created stemmed from a deeply personal understanding of the devastating effects of scleroderma. Founding members Aimee Angle-Zahn, Taloa Gibson, and Alicia Seyler were driven by a shared commitment to provide solace and resources to sufferers and their families. For Gibson and Seyler, the motivation was particularly poignant, as they had witnessed firsthand the tragic consequences of scleroderma through the loss of their grandmother to the disease.
Recognizing the urgent need for a dedicated organization, they established the foundation as an Oklahoma 501(c)3 non-profit, a testament to their unwavering dedication to the Choctaw community. Their vision was clear: to ensure that no one battling scleroderma felt alone and to actively contribute to the pursuit of a cure and improved treatments.
Scleroderma: Understanding the Disease
Scleroderma, derived from the Greek words "sclero" (hard) and "derma" (skin), is a chronic autoimmune disease that affects the body’s connective tissue. This complex condition is characterized by the abnormal production and accumulation of collagen, a protein that forms the structural framework of the skin and other tissues. The excess collagen leads to thickening, hardening, and scarring of the skin, blood vessels, and internal organs.
The manifestations of scleroderma vary widely, ranging from mild skin involvement to severe, life-threatening complications. The disease can affect various parts of the body, including:
- Skin: Thickening, tightening, and discoloration of the skin, often starting in the fingers and hands.
- Blood Vessels: Damage to small blood vessels, leading to Raynaud’s phenomenon (numbness and color changes in the fingers and toes in response to cold or stress) and potentially ulcers.
- Internal Organs: Involvement of the lungs, heart, kidneys, and digestive system, leading to a range of complications such as pulmonary hypertension, heart failure, kidney disease, and gastrointestinal problems.
The cause of scleroderma remains unknown, but it is believed to involve a combination of genetic predisposition, environmental factors, and immune system dysfunction. There is currently no cure for scleroderma, but treatments are available to manage symptoms, slow disease progression, and improve quality of life.
The Choctaw Nation and Scleroderma: A Disproportionate Burden
While scleroderma affects individuals of all ethnicities, the Choctaw Nation of Oklahoma faces a significantly higher incidence of the disease compared to other populations. Studies have revealed that Choctaw individuals experience some of the highest rates of scleroderma in the world, making it a critical health concern within the community.
The reasons for this disparity are not fully understood, but researchers suspect a combination of genetic and environmental factors may play a role. Studies combining modern genetic research with centuries-old tribal records have identified potential genetic markers associated with scleroderma in the Choctaw population. These findings suggest that certain genetic variations may predispose individuals to developing the disease.
In addition to genetic factors, environmental exposures and socioeconomic conditions may also contribute to the increased risk of scleroderma in the Choctaw community. Further research is needed to fully elucidate the complex interplay of factors driving this disparity.
Mission and Initiatives of the Choctaw Scleroderma Foundation
The Choctaw Scleroderma Foundation Created is driven by a multifaceted mission to address the unique challenges faced by the Choctaw community in battling scleroderma. The foundation’s core objectives include:
- Providing Support and Education: The foundation serves as a vital resource for individuals and families affected by scleroderma, offering support groups, educational materials, and access to information about the disease and its management.
- Promoting Research: The foundation actively supports research efforts aimed at understanding the causes, mechanisms, and potential treatments for scleroderma. This includes collaborating with leading research institutions and funding studies focused on the genetic and environmental factors contributing to the disease in the Choctaw population.
- Advocating for Improved Healthcare: The foundation advocates for policies and programs that improve access to quality healthcare for individuals with scleroderma, particularly within Native American communities. This includes working to increase awareness of the disease among healthcare providers and promoting culturally sensitive approaches to diagnosis and treatment.
Collaborations and Partnerships
To maximize its impact, the Choctaw Scleroderma Foundation Created has forged strategic partnerships with leading medical and research institutions. One notable collaboration is with Harvard Medical School, where the foundation is working to develop a "best practices" model for private healthcare in Native American communities. This initiative aims to improve the delivery of care for individuals with scleroderma and other chronic diseases by incorporating culturally relevant approaches and addressing the unique challenges faced by Native American populations.
In addition to scleroderma, the foundation also serves as a resource for other autoimmune diseases that disproportionately affect Native Americans, such as lupus, rheumatoid arthritis, vasculitis, Wegner’s disease, and Kawasaki disease. By addressing these related conditions, the foundation aims to improve the overall health and well-being of the Choctaw community.
Contact Information
The Choctaw Scleroderma Foundation Created remains dedicated to serving the Choctaw community and advancing research and awareness of scleroderma. For more information about the foundation, its programs, and how to get involved, please contact:
Choctaw Scleroderma Foundation
Attention: Alicia Seyler
Rural Route Box 437
Eagletown, OK 74734
Email: choctawscleroderma@gmail.com
A Legacy of Hope
The Choctaw Scleroderma Foundation Created represents a powerful example of community-driven action in the face of adversity. By providing support, promoting research, and advocating for improved healthcare, the foundation is making a tangible difference in the lives of individuals and families affected by scleroderma. As the foundation continues its work, it carries the hope of a future where scleroderma is no longer a debilitating burden for the Choctaw Nation and other communities around the world.