Chapter Name: Uganda League Against Epilepsy
Report By: Dr Angelina Kakooza



Summary of Activities:

1. Epilepsy Society Uganda (EPISOU) under the leadership of Dr. Angelina Kakooza. M – President, conducted a Dissemination Workshop on Epilepsy 10th May 2017 and was held at Grand Global Hotel, Kampala, Uganda. A large multisite study entitled “Studies of Epidemiology of Epilepsy in Demographic Surveillance Systems (SEEDS) study funded by a Wellcome Trust Senior Fellowship in Clinical Tropical Medicine to Prof. Charles RJ Newton was conducted across five health demographic surveillance systems (HDSS) in Africa ( from December 2007 to April 2011. The overall aim of these studies was to determine the prevalence, risk factors and outcome of epilepsy in 5 sites across sub-Saharan Africa. The Uganda site was based at Iganga/Mayuge HDSS in Uganda, with Dr. Kakooza M.A as the site Principal Investigator. The purpose of the half day dissemination workshop was to share the study findings with the key stakeholders, raise awareness regarding epilepsy in Uganda, inform and educate the community regarding its screening and assessment, discuss the study recommendations, engage and obtain feedback from various stakeholders in the field of epilepsy and other childhood disabilities, and stimulate further research in this area.
The key findings from the SEEDS study were that epilepsy is a common problem in this rural area of Uganda, with an estimated overall prevalence of 10.3 per 1000 persons. The prevalence is highest amongst the younger age group and declines with age with focal onset seizures, being the most common seizure type. As a result of the community’s perceptions of the supernatural causes of epilepsy, a high level of stigmatization was observed in these individuals, which forces them into isolation and contributes to their limited social and economic opportunities. The larger percentage of persons with epilepsy are unaware of their diagnosis and are not receiving treatment, with many preferring to use traditional medicines rather than anti-epileptic drugs (AEDs). Regarding the children, a history of complications in the antenatal period and adverse perinatal events were identified as important risk factors for epilepsy, whereas a family history of seizures was the factor most strongly associated in the adults.
2. Epilepsy Society Uganda (EPISOU), also conducted a Symposium on Epilepsy and Childhood disability held from 11th-12th May 2017 held at Grand Global Hotel, Kampala, Uganda.
The two-day symposium attracted a rich blend of multi-professional groups and individuals with interest in childhood disability. The presentations and discussions during the symposium paved a way for opportunities to advocate for the needs of children with disabilities and the professionals and parent support groups necessary to support their care in all parts of the Ugandan region. The workshop and symposium were well attended, and participants were also able to learn about early childhood development and disability from various national and regional perspectives and share professional experiences in the communities of the East African region. Meeting attendees were from Uganda, Kenya, Ethiopia, United States, Sweden and the United Kingdom. The meeting participants included the Assistant Commissioner in charge of Early Childhood Development from the Ministry of Education and Sports, Mr. Ibrahim Bigabwa, the UNICEF Early Childhood Development specialist, Ms. Divya Lata, and the Resident District Commissioners of Iganga and Mayuge, Captain Ben Turyahumura and Mr.Ogasa Barasa respectively, the District Director of Health Services representative (District Health Inspector) for Mayuge district, Mr. Gidudu Richard and the Program manager for the Disability section in the Ministry of Health, Mr. Nsimenta Dennis.
3. Part of the ILAE- Africa strategic plan is to conduct training in epilepsy and strengthen the education activities in the region. A series of Paediatric Epilepsy Training (PET) courses were conducted on the 7th and 8th of August 2018 at the Faculty of Food Science and Technology, Makerere University in collaboration with the British Pediatric Neurology Association (BPNA) and the Uganda Pediatric Association (UPA).
The training was conducted by 8 faculty members who are all pediatricians namely: Dr. Richard Idro, Dr. Angelina Kakooza, Dr. Shema Christine, Dr. Vivian Ssonko, Dr. Chebet Martin, Dr. Robert Sebunya, Dr. Kayina Vicent and Dr. Kalubi Peter
Dr. Mike Pike from the BPNA- United Kingdom came to Uganda to oversee the training. A total of 92 participants were trained with 45 trained on the 7th August 2018 and 47 trained on the 8th August 2018. The participants included pediatricians, psychiatrists, residents in pediatrics, medical officers, clinical officers, psychiatry clinical officers, psychiatry nurses. The teaching was a mixture of both lectures for the whole group and workshops in which participants split up into small groups.
4. Epilepsy Society Uganda (EPISOU) in conjunction with Uganda Medical Association (U.M.A.)
– ELGON REGION BRANCH and the Uganda Pediatric Association (UPA), conducted a Symposium on Epilepsy in children that was held on Thursday 20th and Friday 21st September 2018, at the Rock Classic Hotel, Tororo Town, Uganda.

The Objectives of the Symposium and related activities were threefold.
1) To raise awareness in the public with a view to create an atmosphere for prevention, early detection/diagnosis, effective treatment, and reduction of stigmatization and discrimination of people with epilepsy (PWE).
2) To update and improve the knowledge and ability among health professionals, and motivate and equip them, to give better preventive interventions, and care, for people with epilepsy.
3) To build and/or improve strategies, for better prevention of, and care for people with and/or affected by, epilepsy in the sub-region.

The Major Activities were:
1) Local FM Radio talk Shows in English and the local languages of Ateso, Adhola, and when necessary Luganda.
2) Scientific Presentations on Day 1 of the two day targeting 100 health professionals working in various hospitals and health centers (including private health units)in the region (doctors, nurses, and clinical officers ).
3) Day 2 of the symposium targeted about 80 people/patients with epilepsy, their care givers, community health workers (CHWs) , along with key health professionals, and local leaders, with the three aims providing basic facts on epilepsy, sharing experiences and challenges, and developing strategies for the prevention, early diagnosis, and better care of epilepsy. Interacting with and sharing meals with people with epilepsy and their care givers inspired them and lessened stigma.
The Target Groups were therefore:
1) The General Community or Public.
2) The Affected Community including PWE, Parents, and Care-givers.
3) The Caring Community including Health Care Professionals and Supporting Partners.

1) All the three symposium objectives were achieved.
2) Attendance was over 80% on Day 1, and over 75% on Day 2,of the expected number The total registered attendance on Day 1 of the symposium was 83 out of an expected 100,
and 61 out of an expected 80 participations for Day 2. These included participants from the regional districts of Tororo, Busia, Butaleja, Pallisa, Mbale, Kwen, and Kapchorwa.
On Day 2, during the session Joining Hands Against Epilepsy, the empowered participants resolved to form a regional forum or association whose membership will include not only the people with epilepsy but also their care givers, health professionals, teachers and/or educators, administrators, and almost any other persons affected by epilepsy – to address the needs and challenges posed by epilepsy in the region and beyond. This promises to be a powerful morally therapeutic and inspiring fellowship, as well as a lobby and/or advocacy platform for People With Epilepsy.


1. Low community awareness of epilepsy in general.
2. High levels of stigma for people with Epilepsy (PWE) limiting their acceptability in society.
3. Large epilepsy treatment gap estimated at over 80%.
4. Absence of standardized treatment guidelines for epilepsy and weak referral systems.
5. Minimal support from stakeholders regarding the proper management of people with epilepsy.
6. The loss of our Secretary General, Mr. Augustine Mugarura who passed on the 14th October 2018, may his soul rest in eternal peace

Future Plans:

1. Set up some regional satellite sites country wide for EPISOU members to carry out epilepsy advocacy and public outreach activities in their respective localities.
2. Identify Ugandan Epilepsy Champions to share their successful real life stories and advocate for appropriate Epilepsy care in terms of the need for prompt diagnosis, seeking the right treatment, adherence to medications and thus contribute to the epilepsy stigma reduction.

Officer Election Date: April 2019