Turning Obstacles into True Potential. Presented by: Kandas Kandawire Date: 25 August 2015

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1 Turning Obstacles into True Potential Presented by: Kandas Kandawire Date: 25 August 2015

2 EPILEPSY INFORMATION FOR SERVICE PROVIDERS

3 CONTENTS Myths about epilepsy in other African countries General myths about epilepsy Epilepsy: The Facts What is Epilepsy Causes of Epilepsy Types of Seizures Possible Triggers Do s and Don ts Epilepsy and Employment Reasonable Accommodation Services Rendered by Epilepsy South Africa

4 The Facts Up to 80% of people will have their epilepsy controlled by medication. Epilepsy is not a mental illness nor a psychiatric disorder. Epilepsy is not infectious nor contagious. 1 in 20 people have a seizure at some time in their lives. For most people with epilepsy, the biggest problem they have to face is other people's attitudes to epilepsy. What people with epilepsy most need is understanding and acceptance from the public.

5 What is Epilepsy? It is a condition characterised by recurrent seizures. OR It is the tendency to have repeated seizures.

6 Myths about epilepsy in other African countries COUNTRY SPECIFIC IMPRESSIONS SPECIAL HERBAL / SPIRITUAL REMEDIES Uganda Epilepsy is called ensimbu and refers to a tonic-clonic (grand mal) seizures Epilepsy thought to be contagious Illness brought on by witchcraft A lizard spinning around in circles in the head is disturbing the brain causing dizziness, usually followed by a seizure Social constrains; sometimes the person has to eat and sleep alone, leave school, not play with other children and, most likely, not marry Cameroon Epilepsy thought to be contagious and brought on by witches Epilepsy is known as nwaa or to throw a person on the ground. The term also refers to saturation of the foams in the stomach which overflows and rise to the head, resulting in a seizure People with epilepsy are those who die and are resurrected and are thought to be possessed by the devil Because ensimbu is thought to be a result of witchcraft, it is believed that western medicine is not effective To treat the lizard in the brain, cupping is used to remove the lizard, along with additional medication Severe burns are used by physicians as an aid in diagnosing epilepsy, since cooking fires are so common in Africa, and people convulsing fall into the fires According to traditional healers, burns are a sign that the disorder is incurable Traditional healers are consulted A special diet is assigned to control the foam being produced in the stomach

7 Myths about epilepsy in other African countries continues Malawi An insect moving inside the stomach is thought to cause epilepsy Swaziland Epilepsy is known as sifosekuwa (falling disease) or sitfuluwane (lizard movement) Caused by sorcery, which sends evil animals or spirit into the body, causing convulsions Ethiopia Epilepsy is known as the Aspinning or Arotary illness Traditional healers, with their mixtures of roots, are consulted These mixtures induce vomiting which is thought to rid the stomach of the insect Therapies work to purify and protect Therapies include enemas, inhaling medical fumes, vomiting, sneezing and exorcism Holy waters, priests and spirit specialists (dealing with exorcism and sacrifices) are visited Charms and traditional remedies Patients do not visit a hospital for up to five or six years because of societal pressures and belief in spiritual therapy Retrieved on from

8 General myths about epilepsy People with epilepsy are usually Intellectually Disabled A child with epilepsy can be identified at sight by certain physical characteristics Epilepsy is contagious you can catch it from someone who has it A person with epilepsy cannot work until seizures are totally controlled. Children with epilepsy cannot participate in sports. People with epilepsy can predict the future. Children with epilepsy have more accidents at school than other children. People with epilepsy have very similar personalities Epilepsy is usually the result of head injuries or other trauma People with epilepsy always have convulsions Most people with epilepsy cannot work because of frequent and severe seizures People with epilepsy should not expect to lead normal lives Most people with epilepsy cannot work and have to go on welfare Only surgery can treat epilepsy successfully. When a person has a seizure he is in danger of swallowing his tongue Anti-epileptic medication makes most people too weak to work Children with epilepsy need to attend special schools

9 What is a seizure? A seizure is a sudden disruption of the brain s normal electrical activity. It often starts suddenly and stops spontaneously. Seizures are commonly brief, lasting seconds to minutes and is often followed by a period of drowsiness and confusion. During a seizure, the individual s awareness of his surroundings may be impaired and his behaviour altered.

10 How does a seizure occur? For the brain to work properly, its nerve cells must work in harmony. If this harmony is disrupted then the brain stops working properly and a seizure occurs.

11 How does a seizure occur? Body consists of nerve cells. These nerve cells relay messages to each other, and is controlled by a chemical balance. When there is a disturbance in this chemical balance, the messages fire too fast or too many at the same time This causes a disturbance in the electrical activity of the brain (electrical storm in the brain) Results in a seizure

12 Causes of epilepsy Idiopathic Epilepsy Cannot identify the underlying cause/disorder Symptomatic Epilepsy Can identify underlying cause/disorder Idiopathic Vascular Congenital Trauma Tumours Degeneration Infections

13 Causes of epilepsy The origin of 50 70% of cases of epilepsy is unknown. Other causes include: Trauma at birth e.g. insufficient oxygen to the brain, head injury, heavy bleeding, infection immediately before after or at the time of birth. Head trauma resulting from a car accident, gunshot wound, or other injury Alcoholism and drug abuse

14 Causes Infectious diseases e.g. measles, mumps, diphtheria Genetic factors (multifactorial) Inherited disorders Lead, mercury, carbon monoxide poisoning Degenerative disease Brain infections e.g. Encephalitis, Meningitis

15 Types of seizures Generalised Seizures When the electrical activity affects the whole brain Loss of consciousness Partial Seizures When the electrical activity affects only a part of the brain Consciousness is impaired

16 Seizure Map

17 Possible triggers Stress Sleep deprivation Severe physical fatigue Sleep/Wake cycle Alcohol /alcohol withdrawal Toxins and drugs Menstrual cycle Hyperventilation Startle Poor compliance (not taking medication) Photosensitivity (very rare) Heat and/or humidity

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19 First Aid cont: Do not: move them unless they are in danger restrain them put anything in their mouth or between their teeth give them anything to eat or drink until fully recovered

20 Medical help is usually not necessary, but should be sought if:- repetitive seizures occur without the regaining of consciousness in between the seizures shows no sign of stopping after a few minutes, or there is a physical injury during the seizure

21 IS EPILEPSY A DISABILITY The Employment Equity Act defines disability as being A longterm or recurring physical or mental impairment which substantially limits entry or advancement into employment The Constitutional Court recognises that people are regarded as disabled because of a particular characteristic or quality. The key aspects of the definition are that disability is Impairment related An impairment which substantially limits entry or advancement A Barrier to equal participation can be either:- Impairment related Attitudes and perceptions related Aligns with ICF

22 IS EPILEPSY A DISABILITY CONTINUES So, lets test epilepsy against the definition:- Impairment related Yes, in most cases epilepsy arises from a structural or chemical defect or imbalance in the brain. which substantially limits Yes, it is well documented that the disclosure of a diagnosis of epilepsy substantially limits a person s prospects of being employed or advancing in the work place. Barrier to equal participation related to attitudes and perceptions. Yes, the stigma associated with epilepsy is well documented and the exclusion from equal participation in several areas of life because of this stigma cannot be refuted. Aligns with the ICF Yes, the International Classification of Functioning, Health and Disability stresses that disability cannot be defined on the basis of bodily structure or function alone. Attitudes, environmental circumstances and perceptions have to be taken into account too.

23 Epilepsy and Employment Creating opportunities for employment of people with epilepsy and other disabilities Providing decent work for people with epilepsy and other disabilities Adherence to labour legislation

24 Reasonable Accommodation for People with Epilepsy Arrange work schedule to avoid undue sleep disruption Give an individual a regular shift or steady routine Educate supervisors and co-workers about first aid seizures Have a buddy system

25 What does Epilepsy South Africa do? Provide information about the condition and the management thereof Promote acceptance of the person / family with epilepsy Advocate for the rights of people with epilepsy and other disabilities Promote self reliance through social and economic empowerment programmes:

26 Programmes: Individual counselling Support groups for parents and adults Public education, awareness and training in various sectors Advocacy and self representation Economic empowerment

27 Thank you Questions / Comments

28 Contact Details Address: Physical: 20 Orpiment Avenue, Dersley Springs 1560 Postal: PO Box 1070, Springs, 1560 Tel: Fax: Website: Sharecall: 0860 EPILEPSY ( )