Persons living with epilepsy face difficulties

Dear Editor,

The Epilepsy Foundation of Guyana (EFG) will be observing International Epilepsy Day today and we wish to extend greetings to all those in Guyana who live with epilepsy or have a loved one who is affected by epilepsy or seizures, or what is commonly known as ‘Fits’ in our country. Despite being a young organization with a very modest budget, the EFG has already executed the following high-impact activities, many of which are ongoing:

● Hosted two United Kingdom-based neurologists in 2015 to conduct extensive training in epilepsy and medical outreach sessions.

● Ongoing voluntary, medical consultations by our Physician Directors who have been exposed to

some specialised training in neurology.

● Attained full membership status with the International Bureau for Epilepsy (https://www.ibe-epilepsy.org/)

● Acquired an electroencephalography (EEG) Machine in January 2018, which was kindly donated by TeleEEG (United Kingdom Charity). TeleEEG also trained us to use the EEG and provides interpretations of the EEG recordings.

● Ongoing provision of a very successful anti-epileptic drug - Keppra to persons living with epilepsy. The drug has been made available by the Health and Education Relief Organisation (HERO) (http://heroglobal.org/).

● Ongoing e-medical care for epilepsy patients in Guyana.

● Organising a monthly Support Group meeting for persons living with and affected by epilepsy.

● Ongoing Patient Advocate Care that was designed to ensure that epileptics are adequately supplied with medication and assisted with hospital and clinic visits.

● Ongoing education and awareness sessions at schools, work places and health fairs.

We would like to extend a very special thank you to Guyana Goldfields Inc. for its continued sponsorship and support from since the very beginning of the foundation in 2014. We also would like to thank Dr. William Adu-Krow and Dr. Paul Edwards of the Guyana WHO/PAHO office for their support and guidance over the last couple of years.

Unfortunately, we have noted with great sadness, that persons living with epilepsy are still experiencing difficulty in their everyday lives; be it as a result of the stigma attached to the illness or the nonimportance placed on this medical condition. In some extremely unfortunate cases, young people are not allowed to attend school; other persons cannot find employment; and in one or more tragic cases some persons die as a result of mismanaged seizures. It is against this milieu the EFG continues to engage persons and agencies in working to improve how people with epilepsy are perceived, accepted and valued in Guyana. It is our hope that they get the best medical attention and most affordable treatment, thus ensuring they are empowered and enabled to participate fully in all possible life experiences.

We take this opportunity to join with everyone affected by Epilepsy to celebrate this day! Let us continue to work together and increase awareness to improve our epileptics’ life experiences and remove the stigma attached to this medical condition. Pledge your support by wearing purple and begin the talk about seizures on February 11, 2019. (Upload photos to FB: Epilepsy Foundation of Guyana or #EpilepsyDay).

Yours faithfully,

Deidre Ifill

Secretary

The Epilepsy Foundation of Guyana