The Collectors of Lost Souls

Unraveling the Deadly Mystery of Kuru

In the highlands of Papua New Guinea, a medical mystery that claimed thousands of lives forever changed our understanding of disease.

The Laughter That Trembled with Fear

In the 1950s, among the Fore people of Papua New Guinea's Eastern Highlands, a bizarre and terrifying epidemic was raging. The afflicted developed uncontrollable tremors, lost coordination, and eventually became unable to stand or swallow. Strangely, the disease was often accompanied by bursts of laughter, earning it the name "laughing sickness" in Western reports. The Fore called it kuru—meaning "to shake" or "trembling"—and they believed it was the result of sorcery1 3 .

This mysterious condition was decimating entire communities, affecting women and children at rates eight to nine times higher than men1 .

The young American doctor Daniel Carleton Gajdusek arrived in 1957, intending only a brief stop. Instead, he found a medical riddle that would consume his life, ultimately leading to a Nobel Prize and a profound transformation in our understanding of disease.

2,700+

Estimated deaths from kuru

8-9x

Higher incidence in women & children

50+

Years maximum incubation period

A Disease Shaped by Culture

Kuru was not just a medical phenomenon; it was deeply intertwined with the culture and practices of the Fore people. Understanding it required bridging two worlds: modern biomedicine and Fore spiritual and social life.

A Disease of Mourning

Kuru was spread through the Fore practice of endocannibalism, or ritual cannibalism. When family members died, their bodies were cooked and eaten as part of a mourning ritual. This practice was believed to help free the spirit of the dead and incorporate them into the bodies of living relatives1 9 .

Demographic Mystery

The reason women and children were disproportionately affected lay in the division of this ritual. Women and children typically consumed the brain and internal organs, where the infectious agent was most concentrated, while men primarily ate muscle tissue1 .

The Fore understood kuru not as an infection, but as the result of sorcery. A sorcerer was believed to create a "kuru bundle" containing parts of the victim's body—hair, nail clippings, or clothing—which was then shaken while casting a spell to induce the characteristic tremors3 . This explanation reflected their worldview, where social relationships and spiritual forces governed health and misfortune.

The Three Clinical Stages of Kuru

Stage Key Symptoms Functional Ability
Ambulant Unsteady gait, decreased muscle control, tremors, difficulty speaking Can still walk independently
Sedentary Severe tremors, emotional instability, depressive episodes, sporadic laughter Unable to walk without support
Terminal Inability to sit up, difficulty swallowing, incontinence, unresponsive Completely dependent; often leads to death from pneumonia or malnutrition1

The Scientific Detective Story

When Gajdusek and Australian doctor Vincent Zigas began their investigation, they faced a puzzle that defied conventional medical wisdom. Initial hypotheses ranged from genetic disorders to toxins, but none fully explained the epidemic's pattern.

The crucial breakthrough came when anthropologists Robert Glasse and Shirley Lindenbaum conducted extensive fieldwork among the Fore. Their genealogical research revealed that kuru victims weren't always biologically related, challenging the genetic hypothesis. Instead, their connections were social—linked through the practice of consuming deceased relatives9 . This anthropological insight pointed toward transmission through cannibalism.

Hypothesized transmission pathways of kuru among the Fore people

The transmission hypothesis was confirmed through a landmark experiment. Gajdusek and his team injected chimpanzees with brain tissue from kuru victims. After a long incubation period, the chimps developed a similarly fatal neurodegenerative disease, proving kuru was transmissible3 . This monumental discovery in 1966 showed kuru belonged to a novel class of transmissible spongiform encephalopathies.

Essential Research Tools in the Kuru Investigation

Tool/Method Function in Kuru Research
Field Neurology Clinical assessment of coordination, tremors, and reflexes to document disease progression in remote villages1
Genealogical Mapping Tracking kinship and social relationships to understand patterns of disease transmission beyond biological inheritance9
Anthropological Fieldwork Understanding cultural practices, beliefs, and social structures to contextualize the epidemic2
Primate Inoculation Studies Injecting chimpanzees with human brain tissue to demonstrate the transmissibility of kuru3
Neuropathology Examining postmortem brain tissue for characteristic spongiform changes and neuronal degeneration1
Electroencephalogram (EEG) Differentiating kuru from other neurological diseases like Creutzfeldt-Jakob disease1

The Gift Economy and Global Science

The kuru story transcends mere laboratory discovery. As detailed in Warwick Anderson's The Collectors of Lost Souls, the research was enmeshed in two fragile systems of gift exchange2 .

Gajdusek had to participate in the Fore gift economy to gain trust and access to the brain specimens essential for his research. For the Fore, gifts established relationships between exchanging subjects. Through this reciprocal relationship, Gajdusek became a "true person" in their view, worthy of receiving the precious brains of the deceased2 .

When these body parts passed from the Fore exchange system to the global scientific community, they became alienated commodities—no longer parts of persons but research specimens. This transition highlights the ethical complexities of cross-cultural research long before the establishment of modern bioethics frameworks2 .

Legacy of a Medical Mystery

The impact of kuru research extends far beyond the highlands of Papua New Guinea:

A New Class of Diseases

Kuru became the first human transmissible spongiform encephalopathy (TSE), opening the door to understanding related conditions like Creutzfeldt-Jakob disease in humans and mad cow disease in cattle3 .

The Prion Discovery

Though Gajdusek initially thought kuru was caused by a "slow virus," it was later determined to be caused by prions—misfolded proteins that can induce normal proteins to misfold in a chain reaction. This discovery earned Stanley Prusiner the 1997 Nobel Prize1 3 .

Genetic Resistance

Researchers discovered a naturally occurring genetic variant (G127V) in the prion protein that confers strong resistance to kuru. This variant is highly geographically restricted to regions most affected by the epidemic, a dramatic example of recent human evolution in response to disease1 .

Decline in kuru cases following cessation of endocannibalism in the early 1960s

The End of an Epidemic

With the cessation of endocannibalism in the early 1960s, kuru cases steadily declined. Due to its exceptionally long incubation period—anywhere from 10 to over 50 years—the disease lingered for decades1 . The last known death from kuru occurred in 2005 or 2009, marking the end of a tragic chapter in medical history1 .

Kuru represents both a profound human tragedy and a revolutionary scientific discovery. It reminds us that the boundaries between different ways of knowing—between Western medicine and indigenous understanding, between laboratory science and anthropological insight—are more permeable than they appear.

Key Events in the History of Kuru

~1900

Likely origin of kuru - Believed to have started from a single case of sporadic Creutzfeldt-Jakob disease1

1957

Gajdusek and Zigas publish first Western medical report - Kuru enters modern medical literature3

Early 1960s

Endocannibalism largely abandoned - Australian authorities and missionaries help stop the practice1

1966

Kuru transmitted to chimpanzees - Proof that kuru is a transmissible disease3

1976

Gajdusek awarded Nobel Prize - Recognition for the discovery of novel infectious agents3

2005/2009

Last known death from kuru - The epidemic ends after approximately 2,700 deaths1

References