African Prince attends Dubai Congress
The recent joint IBE/ILAE epilepsy congress in Dubai, the 2nd East Mediterranean Epilepsy Congress, was honoured to welcome His Royal Highness Prince Bandzile of the Kingdom of Swaziland, as a delegate to the congress. Accompanying the Prince and his entourage was Mbusomuni Mahlalela from IBEs Full Member, the Swaziland Epilepsy Association. Prince Bandzile is a Patron of the association.
Prince Banzile spoke during the session Controversies in Epilepsy, which was chaired by IBE President Mike Glynn and Hassan AL Hail (Qatar). Other speakers in the session were Hassan Hosny (Egypt) and Nahida Al Assi (Lebanon).
The following is the full text of His Royal Highness Prince Bandziles address to delegates:
- Director of Ceremonies
- President of IBE
- IBE Eastern Mediterranean Regional Committee
- ILAE Commission on Eastern Mediterranean Affairs
- Chairman of IBE Africa Region
- Distinguished Guests
- Ladies and Gentlemen
I feel humbled and honoured to address this august body, which is the pillar of hope for those of our people who have epilepsy.
I bring with me greetings from His Majesty the King, Mswati III and the people of the Kingdom of Swaziland, especially those who have epilepsy. For those of you who are not familiar with the Kingdom of Swaziland, our country is a landlocked country, situated in the southern part of Africa, to be precise, between South Africa and Mozambique.
We pride ourselves for being the oasis of peace and stability. This has continued to bind us as a nation. I am cognizant of the fact that our country is attending this great congress for the first time, and I hope we shall benefit a lot from the congress. This forum will also present an opportunity to share experiences, discuss pertinent issues, present challenges that we meet, and also map out survival techniques and a way forward for the benefit of our membership.
Our epilepsy organisation is pretty new and it was established in 2004 and, ever since, it has continued to work tirelessly to promote the welfare of our membership. We have successfully embarked on a campaign for raising awareness and sensitizing the nation on issues of epilepsy. Our aim is to create awareness and ensure that the nation is kept abreast on the plight of our membership.
The main focus of our epilepsy organisation in Swaziland is on children where we advocate for the wellbeing of the child with epilepsy both at home and at school. This does not mean that we have forgotten about adults.
We applaud the assistance we received from UNICEF, particularly for providing our members with financial help. The joint advocacy project, between our members and UNICEF was a huge success. We were able to reach out to many of our citizens under this programme. You will all agree with me that people living with epilepsy are suffering from stigmatization from members of society, hence the need to work tirelessly so that our members are given the dignity that they deserve. Society has to embrace people living with epilepsy.
Indeed we have come a long way, and I am happy to report that the message is positively accepted in my country. The nation now is aware of epilepsy, and we will continue to push our agenda forward. Hurdles and challenges will always be evident, but in unison we shall conquer.
We are very pleased to point out that, through networking and strong advocacy, the Swaziland Epilepsy Association has established partnerships with different institutions in the Kingdom.
This includes, inter alia, the National Childrens Coordination Unit (NCCU), the Social Welfare Department, under the Deputy Prime Ministers Office, and non commutable diseases under the Ministry of Health.
We believe that our collaboration with these stakeholders will make our work trouble-free and we will achieve our desired objectives. As an organisation we are determined to create an environment conducive for those who are affected.
I have no doubt that our participation in this congress will benefit us in many ways, especially the following:
- Information gathering in raising awareness and campaigns to help our people affected by epilepsy
- Driving regulations for people with epilepsy
- Safety and monitoring of anti epileptic drugs
- Practical approach to genetic testing and clinical presentation to the testing decision
On another note, I see the epilepsy congress as a conduit to bringing their plight to the public domain.
Our organisation comes a long way. May I also state that we have an ambitious programme, but resources always limit us to achieve our desired goals. One of the major challenges that we face is care and support. At the moment we do not have enough medical specialists trained in the field. However, His Majestys government is doing everything possible to get specialist treatment for our membership.
As I alluded to earlier, the stigmatization is another challenge which continues to humiliate our people. I would like to assure this congress that our advocacy programmes will be vigorous in this regard. We shall continue telling the nation, and the world at large, that people living with epilepsy should have equal opportunities like all human beings. We need to accept that a seizure is one of the conditions that could be addressed.
In conclusion, let me take this opportunity once again to thank this august body for allowing us to share with you distinguished delegates our experiences and activities from the Kingdom of Swaziland. As an organisation we have established a programme that will address the plight of people living with epilepsy. I believe, together, we can make a difference and empower people with epilepsy around the world.
Thanking you for your kind attention. May God bless you!
Attending a presentation on epilepsy, which took place in recent weeks at the Swaziland Epilepsy Association are, from left, His Royal Highness Prince Bandzile, Taiwan Ambassador to Swaziland His Excellency Peter Tsai and Mr Mbusomuni Mahlalela
Global Campaign Against Epilepsy celebrates launch of Eastern Mediterranean regional report
The eagerly awaited launch of the regional report Epilepsy in the WHO Eastern Mediterranean Region Bridging the Gap took place during the 2nd East Mediterranean Epilepsy Congress in Dubai at the beginning of March. Both Global Campaign Co chairs Nico Moshé and Mike Glynn – were in attendance while the WHO was represented by Tarun Dua from Head Office in Geneva and Khalid Saaed, Regional Advisor for Mental Health and Substance Abuse. Others who participated included members of the IBE Eastern Mediterranean Regional Committee and ILAE Commission on Eastern Mediterranean Affairs, as well as Hanneke de Boer, Global Campaign Coordinator.
Speaking at the launch, Dr Dua stated that no developmental projects on the condition were being carried out in the region at the present time.
Treatment guidelines have been formulated but complex beliefs surrounding the condition prevent people from seeking treatment, she added.
Experts from the WHO Regional Office agreed that epilepsy treatment should be integrated in primary healthcare systems in all countries around the world.
Epilepsy affects an estimated 4.7 million people in the region. Despite the fact that treatment can cost as little as 30 US cents, up to 98% of people with epilepsy are unable to benefit in some countries in the region.
Epilepsy, a common neurological disorder, is a target of enduring myths which have shaped social and cultural attitudes and practices. Such myths continue to survive, and contribute in no small measure to the stigma and discrimination faced by people affected by epilepsy and their families. This, in turn, feeds into a vicious circle, where those affected individuals and their families do not access treatment, even where it is available, said Dr Saeed.
The report brings together, for the first time, all the available evidence from the region on the epidemiology, etiology and management of epilepsy. Trauma was assessed as the reason behind the most frequently reported cause of epilepsy in the region. This was followed by infections and tumours.
Lack of resources and qualified staff also hampers treatment, added Dr Saeed.
GCAE Regional Representatives
In a move to further strengthen communication channels of the ILAE/IBE/WHO Global Campaign Against Epilepsy, the Co chairs have recently invited a number of people to become Global Campaign Regional Representatives. Their task will be to act as liaison points between the Global Campaign Secretariat and Task Force and the IBE and ILAE member associations. While this will be a two-way channel of communication, particular focus will be placed on reporting back the activities of the campaign to local level.