SWAZILAND EPILEPSY ORGANIZATION
The SEO currently occupies office number 7 and 8 in the Deputy Prime Minister’s premises in the capital city, Mbabane which are next to the Swazi bank and opposite Bradlows stores. The offices are fully furniture, all thanks to Woodmaster who donated the furniture in year 2008.
The organization is currently under the guidance of the Patron, His Royal Highness Prince Bandzile. It is further directed by the Board of Trustees and daily operations are supervised by the National Director.
The board of trustees is as follows;
Marketing manager of Swazi TV
Telephone; 2404 3036
Matsapha Pick and Pay assistant store manager
Telephone; 2518 7368
Distell Spirits and RTD’s sales representative
Telephone; 2518 4122
Education Under Secretary
Telephone; 2404 2491
Legal officer SEO
Telephone 2404 7028
On a daily basis the Swaziland Epilepsy Organization is run by the National Director, Mr. Mbusomuni Mahlalela. The directors foresees all daily operations and engagements of the organization and ensures that all these operations are implemented in a sensitive manner and positively reflect the efforts made by the organization to enhance the lives of those living or affected by the condition.
The organization also has the public relations officer Ms. Ntombifuthi Mathonsi. The PRO is responsible for communicating the different endeavors of the SEO to the community at large. She further informs the nation of fundraising activities to be staged and activities of giving back to the community affected by epilepsy in one way or the other. Additionally she updates the nation on novel developments and projects explored by the organization.
The SEO also encompass vibrant and resourceful volunteers who are always available to assist, in every way possible, all those living or affected by the condition, who approach the organization in request of diverse and immense support required.
ACTIVITIES
The SEO has annual activities that it has to be involved in, they are as follows;The Epilepsy Congress
The Swaziland Epilepsy Organization makes attempts, every year, to participate the annual international Epilepsy Congress hosted in different countries. The motivation of these congress meetings is to bring together different countries and share knowledge on what their respective epilepsy organizations are doing to raise epilepsy awareness in their own countries. The congress meetings also present the opportunity of gathering data on novel, already available for use epilepsy drugs so they can further be explored in other countries.
Moreover skills and tactics on how to manage epilepsy and support those affected by the condition in one way or the other are discussed. These support structures include getting the know how on how to offer relevant support required by epilepsy patients should they be involved in sporting activities, offer outstanding support to fellow students and colleagues and employees affected by the condition. The congress meetings are also a great opportunity to network.
COLLABORATIONS
In previous activities and projects, the SEO has collaborated with the Coca Cola foundation. This was during the process of setting up the Thulwane garden project. The foundation assisted the organization through funding the borehole and further assuring that the know how on how to establish it is provided.In attempts to create awareness in epilepsy and driving, the organization has collaborated with the Road Safety stakeholder alliance. This has been motivated by the lack of information on epilepsy patients on how to behave and where to occupy seats while using public patients. For example, epilepsy patients are not allowed to drive at all unless they have been seizure free for about ten years. They are further not to occupy seats next to drivers, therefore eliminating the danger of disturbing the driver should one suffer from a seizure.
RAISING EPILEPSY AWARENES
The organization has accessed different communities, especially in rural areas, educating people about epilepsy. In the long run this assist the organization to crash the stigma attached to the condition and further neutralize the myths surrounding the condition. In rural areas, majorities of people still associate epilepsy with witchcraft and bad luck. It is still believed that a person with epilepsy is mentally retarded therefore not in a position to make independent decisions or further their education. This kind of attitude forces guardians of children living with epilepsy to hide them and elders living with the condition are too scared and ashamed to come out and declare their status. As a result, these people do not get any kind of support from the community or family members, therefore their needs are neither recognized nor are they catered for. This poses another threat of these epilepsy patients being too scared to search for medical attention in regard of their condition, but instead consult traditional healers. Results of such actions are long term mental and physical challenges that could actually be permanent.The organization has also been featured on different print media, Swazi TV and radio programmes, still raising efforts in creating epilepsy awareness throughout Swaziland. The goal of such media features is not only to educate the nation about the condition but to further gain knowledge on how the community perceives epilepsy and answer any sort of questions they might have about the condition. The response on such questions is really immense, especially on radio, as the public gets an opportunity to share their experiences on encouraging and supporting people living with epilepsy or the lack of support and knowledge as epilepsy patients. This, in a way helps the organization to be able to predict the mindset of epilepsy patients and their support structures. These programmes also allow the organization the chance top encourage all affected by epilepsy to partake in activities, explore opportunities and live life same as those not affected by the condition.
ANNUAL EPILEPSY STREET JAMBOREE
The epilepsy street jamboree is a walk, normally from the Coronation Park and assembles at Betfusile Street. This walk is normally done in collaboration with the police, to provide safety measures, students participating in form of drum – majorettes and the community and sometimes the Ministry of Health so to educate the nation about the first aid requirements in regard of offering support to epilepsy patients while suffering from a seizure. During the street jamboree, epilepsy patients are encouraged to share their difficulties and any sort of challenges in their journey of living and fighting the condition. This helps to encourage those still ashamed of declaring their status or at least act on it by seeking out for relevant medical attention.The motivation of the annual epilepsy street jamboree march is the epilepsy week, which runs from the 16th to the 22nd of June every year. This is the time where efforts are intensified in raising epilepsy awareness nationwide, involving the larger community to share their views on epilepsy and their experience in knowing and living with people who have the condition. Additionally, epilepsy patients get the opportunity to showcase whatever handcrafts or any other products they are able to produce themselves. They also get the opportunity to sell whatever products they desire.
This helps to show that living with epilepsy does not necessarily mean that one is helpless and therefore has to be dependent on different but that person can still explore whichever opportunities may come his or her way. Epilepsy patients can still in income generating projects, therefore enabling them to be able to support their families. In the long run, this encourages the youth, even those not affected by the condition, to realize that having some sort of a challenge in life does not mean the end of the road, but a person can use that to a stepping stone to greater opportunities. This walk also allows the Ministry of Health to broaden channels of communication with the public and disclose the kind of epilepsy treatment available in the country.