‘Living a normal life with epilepsy is possible’
Nnasaretha Kgamanyane | Monday April 4, 2022 17:24
One thing that makes matters worse for epileptic people is the difficulty of getting first aid treatment from the public when suffering seizures. People without this condition simply do not understand it or what to do when someone else suffers a seizure.
Ithapeleng Khan knows the difficulty only too well. The co-founder of Young Epilepsy Botswana (YEB) recently shared her struggles at the Seventh Annual Purple Day in Gaborone. Purple is the universal colour of epilepsy, chosen for the lavender flower, which symbolises the isolation and loneliness often associated with epilepsy.
“The bullying I received was not from my peers but adults who were supposed to protect me,” Khan recalled.
“My friends decided to learn about my condition and know how they could help me if I had a seizure attack. I do not know how and why I have epilepsy because I was born without it and when I grew up, I was healthy and even played different sports activities like many other children. However, after I started experiencing it, I learnt to live with it and survived because I have a very strong family who supported me throughout.”
Khan further explained that she received a lot of help in her journey by reading more about epilepsy and getting to know what to do when she felt like she was about to get an attack. She learnt to live a normal and healthy life despite her condition.
“I always take my medication faithfully and have not had an attack in two years now.
“Together with my mother, who is my biggest support system, we took it upon ourselves to sensitise the public about epilepsy through YEB.”
Khan’s mother, Naledi Khan, urged caregivers and parents of people and children living with epilepsy, to seek counselling, make sure the patient takes their treatment, learn more about epilepsy and above all know what triggers seizures and the times that one can get them. She explained that seizures have different times and are triggered by different activities.
“Learn more about this condition, take time to know it, take medication and also seek therapy”. Ithapeleng was 13-years-old when she faced a series of challenges including stigma and discrimination.
We decided to make a difference and learn more about the condition as well as spread awareness that epilepsy is a national health concern, which the public is often unable to recognise. Due to lack of public knowledge, when a patient suffers a seizure, many are unable to respond with the appropriate first aid,” Ithapeleng’s mother said.
Naledi continued: “Persons with epilepsy often face social stigma and discrimination and so, the main objective of YEB is to educate and support those living with epilepsy.
“YEB has over the years been a success and we are seeing a gradual change of mindset as people are more informed and hence understand and know how to treat those with epilepsy.
“This has been largely been due to visiting schools from primary to senior to teach them so that they grow with what we have shared with them and are even able to pass the knowledge to their families and friends.”
Her mother also dismissed suggestions that traditional doctors could heal epilepsy.
“Like any Motswana parent, I tried seeking healing from traditional doctors but failed [to get any]. I even heard others saying they had also tried taking the traditional healers route without any change or healing. In addition, there are myths around epilepsy. For instance, there’s a belief that epileptic people should not eat chicken because it makes the condition worse. However, there is no scientific evidence on that. Others think touching a person with epilepsy would give them the condition and that is also untrue.”
YEB public relations and communication officer, Bame Motsomatshuku said over the years, the organisation has recorded successes and has seen more mindset change, as people become more informed about the condition and how to help those who suffer seizures.
“As part of our outreach, YEB distributes seizure first aid pamphlets to hospitals, clinics, offices, malls, and at strategic traffic points for people to learn and practice whenever they are exposed to an individual who is experiencing a seizure.
“We also host events around the country which include the Purple Walk, High Tea, workshops, Wellness Day and others.
“We also attend events using the YEB stall though our biggest challenge is that have not been able to cover the whole country due to lack of resources.”
Since its inception in 2014, the YEB charity walk has attracted over 1,000 participants each year. This year’s walk was held on March 26 in Gaborone under the theme ‘Walk To End Stigma Against Epilepsy’.