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Discrimination, the true affliction for those with epilepsy

Epilepsy is a chronic disease of the central nervous system that affects more than 50 million people around the world, whose quality of life is dependent on the care they receive.

 

Reina Magdariaga Larduet

 

According to a report by the Pan American Health Organisation (PAHO), in Latin America and the Caribbean, over half of those affected by this disorder do not receive any type of care.

Two out of every three countries do not have a programme or plan for the care of those afflicted with this condition, which affects five million people in the region.

According to Claudina Cayetano, the regional mental health advisor at the organisation, people who suffer from epilepsy but are not treated experience recurrent crises, which can have a negative effect on their studies, work and quality of life.

However, with timely diagnosis, adequate treatment, a healthy diet and decreased levels of stress, up to 70% of patients can reduce their suffering and lead a full and active life.

Although many countries have focused more attention on noncommunicable diseases in recent years, the PAHO has recognised that the standard of health care for people with epilepsy is still far from satisfactory.

Some of the factors affecting this situation include a shortage of trained medical personnel and a lack of available medicines, especially in primary health care.

There is also a general lack of information and education about this disease, both among people who have this neurological disorder and their families, as well as in the wider community.

Epilepsy causes episodes of recurrent seizures, and the condition is considered to be a priority issue in public health care by the PAHO, which also acts as the regional office of the World Health Organisation (WHO) for the Americas. The PAHO supports the strengthening of the health sector response, especially in primary health care.

The WHO health agency in the region recently published a new guide, “The Management of Epilepsy in the Public Health Sector 2018”, with the aim of helping countries to design programmes to detect and diagnose the disease.

The publication explains that providing basic antiepileptic drugs at the primary care level is a crucial, very effective and low-cost measure. The WHO explains that seizures caused by epilepsy are brief episodes of involuntary movements that can affect a part of or the entire body, and are sometimes accompanied by loss of consciousness and loss of control of the sphincters (the ring-shaped muscles that open and close certain natural body passages).

According to the organisation, seizures are caused by excessive electrical discharges in groups of brain cells that can occur in different parts of the brain. The frequency with which seizures occur can vary from less than once a year to several times a day.

Temporary symptoms include loss of consciousness or awareness, disruptions in movement, disruption to the senses (including vision, hearing and taste), mood or other cognitive functions.

Experts from the UN agency report that victims of these convulsions tend to suffer physical injuries such as fractures and bruises, as well as higher rates of psychosocial disorders such as anxiety and depression, among others.

The WHO estimates that about 2.4 million cases of epilepsy are diagnosed annually. In high-income countries, between 30 and 50 people in every 100,000 are diagnosed with epilepsy each year, and in low and middle income nations, this figure can be up to twice as high.

This is due to the increased risk of endemic diseases such as malaria or neurocysticercosis, and higher rates of injuries related to traffic accidents or childbirth, explained the specialists.

Other factors include differences in medical infrastructure, the availability of preventive health programmes and the accessibility of care, they added.

Considered the second most frequent neurological disease after headaches, epilepsy can affect people of any age, but is most often seen in children under one year old and in adults over 65.

Given this reality, the WHO highlights that in some places, the discrimination and social stigmatisation surrounding epilepsy are often more difficult to overcome than the seizures themselves. (PL)

(Translated by Lucy Daghorn) – Photos: Pixabay

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