Monday, February 8, is International Epilepsy Day (IED). The Day, celebrated on the second Monday of February every year, is jointly organised by the International Bureau for Epilepsy and The International League Against Epilepsy.
The Day, which started in 2015, is specially set aside to celebrate and highlight the problems of people with epilepsy, their families and carers. The day is also used to promote awareness of epilepsy.
In addition, the day offers a platform for people with epilepsy to come out of the stigma share their experiences with people around the world.
Statistics indicate that around 50 million people worldwide have epilepsy and an estimated five million people are diagnosed with epilepsy each year.
According to the World Health Organisation (WHO), “epilepsy is a chronic non-communicable disease of the brain that affects around 50 million people worldwide”.
“It is characterized by recurrent seizures, which are brief episodes of involuntary movement that may involve a part of the body (partial) or the entire body (generalized) and are sometimes accompanied by loss of consciousness and control of bowel or bladder function”. It is critical to note that epilepsy is not contagious.
Some of the causes of epilepsy, still, according to WHO, include a loss of oxygen or trauma during birth; congenital abnormalities or genetic conditions with associated brain malformations; a severe head injury; stroke that restricts the amount of oxygen to the brain; an infection of the brain such as meningitis; certain genetic syndromes and brain tumour.
It is said that seizures, which is a characteristic of epilepsy, can be controlled. Available statistics confirm that up to 70 percent of cases of epilepsy can become seizure-free by taking anti-seizure medication.
However, there is a huge treatment gap as three quarters of people with epilepsy, living in low-income countries, do not have access to required treatment.
In low-income countries, that are more affected than high-income nations, availability of anti-seizure medication is an issue. For those who respond poorly to drug treatment, surgery might be an option.
Head injury is one of the major causes of epilepsy so, if we can prevent head injury, we would have prevented about 25 percent of the cases of epilepsy. According to experts, adequate perinatal care can reduce new cases of epilepsy caused by injury at birth. The use of drugs and other methods to lower the body temperature of a feverish child can reduce the chance of febrile seizures.
Epilepsy as a health condition, has serious social and economic effects. The cost of treating epilepsy places substantial financial burden on both the country and family of persons with the condition.
There is a strong tendency that people with epilepsy will suffer more from fractures and bruises which may occur during seizures.
Persons with epilepsy may suffer psychological problems such as anxiety and depression. There are cases of persons who have committed suicide as a result of shame of the condition.
Perhaps the most serious of the social effects of epilepsy is stigmatisation. The effects of the social stigmatisation that comes with epilepsy are even more difficult to overcome than the seizures associated with epilepsy and these can impact on the quality of life for people with the disease and their families.
People with epilepsy are often discriminated against. In some countries, they experience reduced access to education, they are denied from obtaining driver’s license, they sometimes are not allowed to go into certain professions just as they have reduced access to life insurance. In some cultures like China and India, some parents may not allow their children get married to someone with epilepsy.
With support from the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE), WHO is spearheading a global campaign against epilepsy to bring the disease “out of the shadows”.
This two-pronged approach aims at providing better information and raising awareness about epilepsy as well as to strengthen public and private efforts to improve care and reduce the disease’s impact.
With the debilitating social effects of epilepsy, particularly stigmatisation, Nigerdeltaconnect sought expert opinion on what family members of persons with epilepsy should do to offer sufferers of epilepsy better support.
According to Dr. Appeal Adonkie, a Yenagoa-based medical practitioner, “relations of persons with epilepsy should ensure that, as much as possible, there is always someone with their brothers or sisters with the condition. This is because seizures can come at any time and such seizures can be fatal sometimes, especially when persons with epilepsy fall and hit their head against hard objects”.
He also said such relatives of persons with epilepsy must acquaint themselves with the first aid regime for sufferers of the condition so they know exactly what to do when seizures come.
As the International Epilepsy Day is being celebrated today, we are all called upon to join the worldwide effort to get #EpilepsyDay to trend on Twitter and other social media sites.
People can also share a photo of themselves holding an International Epilepsy Day sign on social media using the hashtag #EpilepsyDay.
Tag @IntEpilepsyDay and @EpilepsyFdn in your tweets.
We are also encouraged to share the WHO seizure first aid posters which exist in multiple languages!
The day also calls for all people to advocate for appropriate legislation that will guarantee human rights of people with epilepsy and encourage people with the disease to live to their fullest potential.
Whoever you are, wherever you are, you have a role to play, using the social media in spreading the epilepsy awareness message. We have a duty to join in raising the quality of life for people with epilepsy.
Let us all get involved. Let us speak with one global voice to heighten the epilepsy awareness message.