Yesli’s Story: Income Inequality, Mountainous Terrain and a Shortage of Specialists Hamper Diagnosis and Treatment of Rare Diseases in Chile

By Juan Ambar

June 20, 2017

Yesli Jordán Paillacán overcame a childhood
made difficult by an undiagnosed
primary immunodeficiency.

When we first met Yesli Jordán Paillacán, she was a shy young girl living in Araucanía, Chile’s poorest region in terms of gross domestic product per capita where 80 percent of the population depends on the public health system. Yesli’s life had been continually disrupted by frequent hospitalizations that typically lasted from five to 10 days, and by other health complications that dramatically affected her quality of life.

Access to care in rural areas
She could not attend school regularly, particularly in the winter, when weather conditions exacerbated her condition. Access to care for patients like Yesli in rural areas of Chile is complicated by the distances that often separate them from hospitals and health care centers. In rural areas patients must often travel over rugged mountainous terrain to receive medical treatment.

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The Challenges of Diagnosing, Treating and Finding a Cure for Primary Immunodeficiency – One Doctor’s Perspective

More patients are being properly diagnosed and treated than ever before, but obstacles remain in the pursuit of a cure.

By John Sleasman, MD

April 27, 2017

Immunologists are using innovative treatments such as cell-based therapies at Duke Children’s Hospital and Health Center (pictured above), which involves replacing missing cells or genes to correct primary immune deficiency diseases.

Photo courtesy of Duke Health

This is an exciting time in the Department of Pediatrics at Duke School of Medicine’s Division of Allergy and Immunology. Late last year we opened the Jeffrey Modell Center (JMF) for research and clinical care for children with primary immunodeficiency (PI) diseases — a group of more than 300 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly.

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