Nick ‘s disease is a neurological disease endemic in children and adolescents in southern Sudan, Tanzania and northern Uganda. The condition is characterized by constant nodding fits while eating and a gradual physical and mental decline. Nicking disease usually leads to death within a few years.
What is pitching sickness?
Nicking sickness is a disease found only in East Africa. It has been observed in Tanzania and South Sudan since the early 1960s. It is characterized by nodding attacks when eating or when it is cold, and by a gradual mental retardation. A satisfactory explanation for their origin could not be given until today. See definitionexplorer for Clubfoot Definitions.
In particular, the neurotoxicologist Peter Spencer examined the disease more closely. He was able to identify typical symptoms. At the moment, however, only assumptions can be made as to the cause. Peter Spencer described pitching sickness as a slowly progressive fatal dysfunction. He assumed that people suffering from this disease lived an average of three to four years.
However, there are also cases where this disease has existed for more than ten years. There are even reports of healings. The nodding seizures are also often associated with classic epileptic seizures. Brainwave studies have shown that the nodding seizures are accompanied by abnormal brainwave patterns resembling those seen in epilepsy.
The disease is currently only found in southern Sudan in river settlements with a prevalence of 2.3 to 6.7 percent. By 2008, the disease had also spread to some areas of northern Uganda.
So far, only speculation can be made about the cause of pitching sickness. To date, it is not clear what triggers the disease in the first place and why it only occurs in a limited territory. However, it is suspected that it is an infectious disease or an autoimmune disease triggered by an infection.
Another assumption focuses on chronic poisoning from environmental toxins that contaminated the area during the civil war. However, there is strong evidence of a connection with the nematode Onchocerca volvulus. It is already known that this worm is spread by the black fly and is the cause of river blindness.
The nematode could be detected in almost all patients affected by Nick’s disease. However, it is also strange that no cases of nodding disease occur in other areas where this nematode spreads. Therefore, the assumption of further co-factors for the development of this disease is obvious. These could be chemicals that have not yet been detected.
There is also the possibility that the nematode in this area is a carrier of special microorganisms or parasites, which are the real triggers of Nick disease. An autoimmune disease as a reaction to an infection is also considered possible.
Symptoms, Ailments & Signs
As already mentioned, nodding sickness is a slowly progressive neurological disorder, the main symptom of which is constant nodding movements of the head. The affected child stops growing and mental development stops. Mental retardation even occurs over time.
The nodding seizures are triggered when eating or even just looking at traditional foods or when it is cold. If unfamiliar food such as chocolate is served, no nodding fits occur. Even after the meal is finished, the nodding fits stop. Between 10 and 20 head nods may occur during a seizure. Severe seizures can even lead to collapse. This often leads to further damage.
It is not uncommon for children to fall and injure themselves considerably. It has already happened that those affected have fallen into open fireplaces or onto sharp objects. As part of the seizure, children also become disoriented and often get lost. The prognosis of the disease is very poor. According to previous experiences, it is not curable and even progresses.
After several years, pitching sickness is usually fatal. There are different statements about the duration of the disease. According to some observations, pitching sickness is said to lead to death within three to four years on average. On the other hand, there have also been reports of people who have been suffering from this disease for more than ten years. However, there are also statements according to which a few young people are said to have recovered.
Diagnosis & course of disease
Nicking disease is mainly diagnosed on the basis of the typical symptoms. Brainwave measurements have demonstrated abnormal brainwave patterns during nodding seizures. MRI scans can reveal a severe loss of brain mass. The hippocampus and glial cells also show severe damage. So far, however, there are no indications of the real triggers of the disease in the studies.
As a variant of early childhood epilsepsy, pitching syndrome almost always leads to complications. Unfortunately, the associated pitching attacks are not the only symptom. However, this symptom alone can cause the affected children to fall during a seizure. They sometimes sustain serious injuries.
Those affected are no longer in control of their limbs during the attacks. Since the disease mainly occurs in African countries such as Uganda, children often fall into open fireplaces or touch sharp objects when they fall. In addition, such children often get lost. Without any protection, the disoriented easily fall victim to wild animals. In addition, pitching disease is a disease that usually ends fatally.
It is progressive and is a serious neurological disease. The biggest problem is the rarity and the narrow regional area in which pitching sickness occurs. There is no medical care there. Modern diagnostics are just as rare. But even if these things exist, there is still no cure for pitching sickness.
It is unclear why a number of those affected develop complications and mental retardation but do not die. This may be an indication of a parasitic or infectious trigger that is common in these regions.
When should you go to the doctor?
Parents who notice signs of mental retardation or the typical nodding fits in their child should have this clarified immediately by a doctor. Longer-lasting symptoms must be examined and treated by a specialist in order to prevent permanent damage. In the event of a circulatory collapse, an ambulance must be called. The affected child must then be treated in a hospital. If the symptoms described occur during or after a stay in one of the risk areas, a doctor must be consulted immediately.
At the latest after returning home, the traveler should undergo a comprehensive medical check-up and, if necessary, be treated. Nicking sickness needs to be treated by a neurologist or another internist. Since the disease is usually associated with long-term damage, therapeutic treatment is also useful. Since pitching disease is a progressive disease, close medical monitoring is also necessary. Otherwise, further health problems can occur, which further limit the quality of life of the patient.
Treatment & Therapy
Since the causes are completely unclear, there are also no satisfactory treatment methods. So-called anticonvulsants are used. Anticonvulsants are medicines used to stop epileptic seizures. However, there is still no documentation on the extent to which the disease is influenced by these drugs. Antimalarials are also used. Again, no results are published.
Outlook & Forecast
The prognosis of pitching sickness is unfavorable. Despite all medical advances and efforts, the disease has ended fatally for those affected within a few years of life. One difficulty is that the disease has so far only occurred in East Africa. Another challenge is that the cause has not yet been adequately clarified. There are therefore numerous questions that are unanswered according to the current status and thus deteriorate or even prevent adequate medical care.
The patients suffer from motor disorders and reduced mental performance. Uncontrolled seizures occur which, without the fastest possible medical care, result in the immediate death of the patient. Due to the existing symptoms, the general risk of injury is increased for those affected. Sudden accidents can occur that show a life-threatening development. Open flames or sharp objects often become a health hazard. The patients are mostly disoriented and are therefore often defenseless in their home country at the mercy of the wilderness. They cannot classify natural hazards and react accordingly.
Since the disease is considered incurable, relatives are often overwhelmed or show negative behavior towards the patient for religious reasons. This further worsens the general situation and leads to more severe health conditions.
So far nothing can be said about the prevention of pitching sickness because the real causes are not known. There are assumptions that the poor hygienic conditions promote the outbreak of the disease. Protection against infestation with the nematode Onchocerca volvulus certainly plays an important role in combating nodding disease.
Nicking disease is a little-researched disease that cannot be treated causally so far. Follow-up care focuses primarily on the medical monitoring of a cured disease. Regular check-ups ensure that the medication is optimally adjusted and any complications are clarified quickly. In addition, any incidents are clarified as part of the aftercare.
Parents of affected children must inform the doctor about falls or injuries, for example. If necessary, the prescription of a sedative can be useful. Aftercare also includes eliminating possible triggers. Parents should consult their doctor on a regular basis about this.
Follow-up care is provided by the doctor who diagnosed and treated the condition. Sometimes other specialists have to be consulted, since it is an extremely rare disease and the knowledge of a general practitioner is usually not sufficient. As part of the aftercare, the symptoms are reduced with medication and behavioral therapy.
It is also important to educate the affected children about their illness. Comprehensive education ensures that children suffering from pitching disease recognize seizures at an early stage and independently take the necessary preventive measures in adolescence and adulthood.
You can do that yourself
Nicking sickness is a disease that is usually fatal. Those affected can primarily support the therapy by adhering to the medical guidelines. Above all, strict personal hygiene and a balanced diet are important factors in self-treatment of pitching sickness. In addition, a complaints diary should be kept in which the patient notes any side effects as well as side effects and interactions caused by the prescribed medication.
Talking to other people who are affected, but also to friends and family members, often helps. Talking helps in accepting the illness, especially in the case of a severe course of the disease. The relatives can support the person concerned and often also contribute to a recovery by changing their lifestyle. A hygienic household helps to ensure that the infection at least does not spread further.
In the case of a serious illness, a place in a palliative care unit or in a hospice should be organized at an early stage. The relatives of the person concerned should speak to the doctor responsible for this. Since the chances of recovery are relatively poor, it may also make sense to have therapeutic support, which supports the affected person and their relatives during the illness and also helps with organizational tasks.