The Epilepsy Glossary according to The 1st African Epilepsy Congress

6:47:00 AM

With Sunday from Nigeria

Africa – Continent rich in resources, needs management adjustments, represented by Kenya, Ethiopia, Senegal, Zambia, Nigeria, Cameroon, Uganda, Tanzania, South Africa, Swaziland, Zimbabwe, Gambia, Tunisia, Benin, Burkina Faso and Malawi at the 1st African Epilepsy Congress.

Adolescent Health – A neglected area in the health sector, there is not transition from the pediatric unit to the adult hospital and given most of adolescent issues are related to their development; physically and emotionally, there is need to fill this gap.

AED – Antiepileptic drugs that range from Carbamazepine, Phenobarbital, Phenytoin, and Valproate

Bungee Jumping – Driving and Swimming are some of DO NOT DO activities for persons with epilepsy.

Donor Fatigue – There is need for Africans to get personal solutions over and above relying on donors to do research or awareness creations.

Employment – 5.4% of persons with epilepsy are in paid employment, 22.4% are in self-employment and 72.2% are unemployed due to frequent seizures, memory loss, violence and mostly being sacked due to discrimination.

Epilepsy – One of the oldest and commonest neurological disorders affecting 70 M worldwide with 90% on the low end.

Epileptic Surgery – Removal or modification of part of the brain to reduce seizures.

FrenEnglish – The language used to do a presentation on Brain Imaging – MRI and CT scan stuff, in the afternoon and keep the audience hooked, despite the complexity…still make it sexy. Yap I floated all afternoon thinking of how awesome the presentation was yet I understood nothing.

Guidelines – There is need for integration of international conventions and local acts eg Kenya Disability Act which requires employers to set aside 5% of their jobs for persons with disabilities, employment act 2007 which is against employee discrimination regardless of their age, race, sex, disability.

Head nodding syndrome – Type of seizures where the head nods continuously.

Irony – The Father of Western Medicine is an African yep…Imhotep

June 21st – 23rd – Amazing three days of back to back epilepsy talks at the 1st African Epilepsy congress that covered hard science stuff,rights for persons with epilepsy, amazing fashion and even better food though nothing African

KAWE – Kenya Association for the Welfare of persons with Epilepsy. This is the to-go to organization for epilepsy control. They run three clinics; Karen, Mathare and Riruta where they sell generic drugs that are very affordable.

Learning Disorders – Most children suffer from learning disorders, low academic achievements and emotional and behavioral disorders.

Mad Pig Disease  -  The name given to epilepsy across the Asian continent.

Myths – Across the African continent, epilepsy is those to be a curse, someone’s destiny for ill doing, hereditary (there is some truths here), Punishment, Contagious and people believe persons with epilepsy cannot think, are unable to work or attend school and should not have children.

Nothing is impossible for persons with epilepsy.

Outdated data – Though mainly pointed on lack of funds, there are many alternatives, we just need to be creative eg piggy banking on areas that already have funding.

Pill - There are is a love hate relationship between AED and Oral contraceptives and issues of malformation in the babies born and also resistance of oral contraceptives by women on AEDs as well as grand side effects    (Qn: So what are women on AEDs meant to use for Family Planning?)

Status epilepticus – A seizure that takes more than 30 min without recovery, both convulsive and non-convulsive

Traditional Healers – They have a role to play and there is need for a collaborative effort between them and doctors so that proper screening and diagnosis is given.

Urine - Many stories related eg in Nigerian women are told to urinate on kids to heal them, others are told to drink their own urine and I bet you all remember my post on Kibera outreach where we were told jumping on urine may make it contagious.

Vulnerable groups – Elderly whose seizure may be as much as an eye twitch and mostly end up having brittle bones.

Way Forward
Collaborative effort

1.       Think beyond seizure control as that is more reactive than proactive
2.       Early childhood screening is important
3.       Specialized teachers
4.       Continuous health education and awareness on epilepsy
5.       Specialized schools for those with Chronic seizures
6.       Empowerment of persons with epilepsy to ensure they remain resilient
7.       Social security benefits
8.       Youth  friendly facilities
9.       A local medicine manufacturer
10.   Health priority should shift from survival illness only and also include disabilities

What to wear – Traditional regalia
I loved the Swazi dude

Tshirts vs Teachers - *mental joke right here* so this guy from Senegal runs a Tshirt campaign and during open discussions the moderator asks how to include teachers in the awareness creation chain and he confidently goes on and on about tshirts…yep when you have an international congress, have loads of visual aids because accents can be mislead (:

More pictures here 

Have a lovely day.

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