Nodding Syndrome on the Spectrum

It has been said that “every newly emerging disease begins with a mystery,” and yet the cause of Nodding Syndrome (NS) remains elusive after over a decade of searching.

Nodding Syndrome (NS), originating deep in the remote jungles of East Africa, is a neurological disorder characterized by seizures, cognitive decline, behavioral and language impairment, muscle weakness, physical wasting and stunted growth.  Many thousands of children have been affected by the disease’s devastating impact, resulting in lifelong physical challenges as well as

impacts to the individual’s quality of life. These children attain typical developmental milestones until age four or five years at which time symptoms first manifest with a general and often steady decline in function thereafter. While smaller epidemics of NS have also occurred over the past 25 years in conflict zones of South Sudan and in Northern Uganda, the cause of this disease has yet to be identified as geographically limited.

There has been some progress for afflicted children through the work of Hope for HumaNS. This small, privately funded nonprofit from 2012 through 2017 provided services through specialized health care centers and saw many children survive and improve despite what the Centers for Disease Control (CDC) had thought to be a fatal diagnosis. With more funding for this and other relevant nonprofits conducting similar lifesaving work, there could be more positive efforts initiated and progress than can be made.

Did Nodding Syndrome Have Its Beginnings in History?

The onset of NS in Northern Uganda coincided with a long twenty-year, brutal civil war (1986-2008) pitting Ugandan government troops against rebels of the Lord's Resistance Army. As a result of this bloody, drawn-out conflict, devastating environmental and cultural changes transcended upon the local population, degrading the landscape and changing every aspect of the population’s existence. Their entire world was dismantled.  To add to the challenges of war and post-war recovery, the Acholi people of the area found a new disease on their lands destroying the lives of their previously healthy children.  Before the war, there were no cases of NS in this region.  When the war ended, so did the new cases of this mysterious disease. Was this a coincidence or a valid sign that external factors impacting camps with “internally displaced people” and where 1.7 million Acholi were forced to live for over two decades.

There is a widely held belief among the communities in Northern Uganda that NS originated from contaminated relief food provided by relief agencies during the internal displacement of citizens affected by the war. However, there may have been a dramatic alteration of the gut microbiome from the food delivered to the encampments. The microbiome, the collective genomes of the microbes that live inside and on the human body, has been passed down to us from ancient times.  This ecosystem determines metabolic functions and mitochondrial health, protects against pathogens, educates the immune system and, through these basic functions, affect directly or indirectly most of our physiology including the health of our brain from the gut-brain connection. The microbiome ultimately determines our destiny and it is now believed that chronic, systemic inflammation due to alteration of the gut microbiome is the leading driver of some of the world's most serious diseases. Our modern world is profoundly disrupting this essential ecosystem of life, which may very well have initiated the development of NS.

While living in IDP camps, the displaced had exposure to war munitions during the protracted 20 years of conflict. The conditions in these camps were horrific, with a mortality rate of 1000 people each week. The individuals and families living there had extremely limited food rations, unsanitary overcrowded conditions and ate food metabolically different than the traditional foods they had consumed for generations. Those inside the boundaries of these so-called “protected areas” suffered constant biological, social and psychological stressors, exposure to many infectious diseases, and loss of their cultural heritage and traditional lifestyle.

Numerous studies and investigations by the CDC, the World Health Organization (WHO), and esteemed researchers have postured and subsequently cast aside many different theories as to the cause of NS. While the debate continues, the children afflicted with this disease suffer greatly until their demise. Jan Egeland, the UN's under-secretary for humanitarian affairs, in 2003 called this “a moral outrage (and) the world's biggest neglected humanitarian crisis.” He asked “Where else in the world do children comprise 80% of the fighters in a rebel movement? And where else has 90% of the population displaced from their homes?”

In Sub-Saharan Africa, the people and their culture are inseparable and it is their culture that affords them their identity, self-recognition, and way of life. "Without culture you are no one, without culture you are dead,” Paramount Chief of Acholi, David Onen Acana II, noted, “Their voices continue to be unheard and their stories untold. The silence of the afflicted is deafening.”

The NS Connection to Disease Evolution.

Across the world, we are witnessing a rising incidence of disease, much of it occurring in epidemic proportions. The prevalence of autoimmunity is rising at unprecedented rates. Among researchers, there is almost uniform agreement that exposure to ever-increasing levels of infectious triggers, unhealthy food and diets along with environmental toxins and chemicals are all interfering with the immune system’s ability to distinguish self from non-self.  A multitude of factors are “tipping the immune system over the edge.” Rates of brain diseases are sky rocketing. One in 33 children are diagnosed with autism versus a rate of 1 in 10,000 in 1970 and many clinicians believe we are expected to see one in two children born on the spectrum in the years to come .    

We are seeing increases in cases of other diseases afflicting children such as Pediatric Autoimmune Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS). At least 1 in 200 children today are affected by these frightening brain diseases thought to result from various infectious and environmental triggers. These children may seemingly overnight become abruptly impaired with severe obsessive-compulsive behaviors, cognitive dysfunction, behavioral aggression or regression, social impairment, tics, mood changes, psychosis, food restrictions, phobias and seizures. The cause of PANS is unknown, but in most cases is thought to be triggered by infections, metabolic disturbances, and other inflammatory reactions. Without treatment the prognosis for these children is very poor and many times the neuropsychiatric symptoms will become permanent.

Nodding Syndrome and PANS have strong clinical similarities. So is NS a warning to us all?   
Could the fate of these children thousands of miles away be just another glaring example of what is happening to the health of a world overrun with environmental toxins, the change in food we eat from nutrient-rich to nutrient-poor diets, the overuse of antibiotics to treat illness, increased stress, sleep deprivation, and more. We inarguably live on a planet we have allowed to run rampant for decades.

The Answers May Be In Each of Us.

So perhaps there is no mystery at all as to the cause of NS and other emerging diseases.  Given that NS is an environmentally induced disease with epigenetics strongly in play, we have to consider this same line of thinking could apply to other disorders like PANS and PANDAS.  

The entire world truly needs answers. As we struggle to understand the changing face of many diseases, we should look to the incidence of NS and learn from the example this devastating disease has provided. With new information acquired over the last decade resulting in autoimmune mechanisms for neuropsychiatric disease, it is imperative that the afflicted children in Northern Uganda be helped and new lines of research initiated. While individuals in many developed nations have far greater access to medical care, these children in Africa do not enjoy that same advantage.

In a shared sense of humanity, we are ultimately one mind, body, spirit and soul. The road to good health is one we all desire to walk. This is a story of Ubuntu, an African word that means “I am because you are.” In this same shared essence for life, we walk forward, hoping and dreaming of a future more akin to our past lives as humans on this planet, with clean food, fewer toxins, and a world less plagued with debilitating disease that may very well have been and could still be preventable.  

In health,
Dr. Suzy Gazda

Sources:
David Quamann, author of Ebola: The Natural and Human History (2014)
World Health Organization
https://www.who.int/onchocerciasis/symptoms/nodding_syndrome/en/
Centers for Disease Control and Prevention:
https://wwwnc.cdc.gov/eid/article/19/9/pdfs/13-0401.pdf