EPILEPSY – MYTHS & FACTS

DR .H.V.SRINIVAS

CONSULTANT NEUROLGIST

Sagar Apollo Hospital & Agadi Hospital

Indian Epilepsy Association

Other Names used in practice Seizures Fits Convulsions

EPILEPSYHow common is Epilepsy ? About 1% of the population across the world. Age group 10-20 yrs 50-60 yrs Poor / rich ; developing / developed countries Literate / illiterate ; Male / Female.

EPILEPSY• World wide about 40 million People With Epilepsy (PWE)• India about 80 lakhs of PWE• It is well recognised that PWE suffer less from a seizure disorder and more from stigmatisation social prejudices, thus affecting their quality of life.• This is all because of lack of adequate knowledge of epilepsy.

EPILEPSY

- Early Greek view epilepsy as a visitation from the Gods and thus a sacred disease.

- Christians in medieval times followed biblical belief that epilepsy was one result of demonic possession.

1857- epilepsy colony

6Dr R P Joshi

EPILEPSY

IN THE PASTKnowledge- Possessed by Devils- Mental Illness - No Drugs available- Hereditary

Attitude & Practice.- Sorcery - Witchcraft - Cannot be cured. - Cannot marry - Families ostracised

Common mythsCurse Intelligence is affectedSpreads to others by touchingAffects studies, careerCan not marry/have childrenCan not be curedLife long medication

EPILEPSY

Knowledge- Brain Disorder- Nearly 80% well

controlled with drugs - Hereditary only in about

4%. - 2-5 yrs of treatment

Attitude & Practice.- Mental Illness - Cannot be treated or

life long treatment - Hereditary- PWE are not normal –

Marriage, Education, Employment.

IN THE PRESENT

-

- Why should you know about Epilepsy ?

- In Hypertension, Diabetes, …… patients & immediate family members require education and information about illness.

- In Epilepsy – patient, family, friends and the society too needs education

-- To dispel Myths & Stigma attached to epilepsy and integrate the person with epilepsy into society.

EPILEPSYSocietal attitude towards PWE affects - Education - Employment - Marriage - Children - Sports - Travel Ultimately SELF ESTEEM

What NOT to do during the attackDO NOT - Push spoon in the

mouth.DO NOT - Pour water in the

mouth.DO NOT - Restrain movements DO NOT - Keep keys/iron rod in

hand.DO NOT – put footwear/

onion near noseApril 18, 2023

X

During the attack

Stay calm, do not panic

Loosen neck tie, tight collar

Remove spectaclesPrevent injuries to

person

During the attack

burn to stop attack !!

EPILEPSYWhy does epilepsy occur

- Due to excessive & abnormal electrical discharge from the brain.

- Largely reasons NOT known.- Infrequently due to brain

tumour, tape worm infection blood clot, Brain TB etc.

EPILEPSYAre there any specific

investigations ?

• EEG – for Type of epilepsy & NOT for diagnosis of epilepsy.

• CT / MR – for cause of epilepsy ( When suspected ) E g. TB, tapeworm, brain tumour.

EPILEPSYA person with epilepsy is totally normal in between

the attacks

What precautions to prevent next attack ? - Absolute regularity in drug intake

- Adequate and regular sleeping hours 6-8 hours- Avoid total fasting- Inform your doctor if seizures recur inspite of above.- Physical exertion or mental tension does not aggravate

epilepsy

EPILEPSYIs Epilepsy controllable ?

- Yes in 75% - 80% seizure free with drugs.

- 70-80% of these can stop medication depending on type of epilepsy.

EPILEPSYIs it life long treatment ?

- Certainly NOT

- It is 2 to 5 yrs of seizure free period.

EPILEPSYIs epilepsy hereditary illness ? Certainly

Not

Gen population -1%

One parent / sibling - 4% One parent & sibling - 8%

This also in some types of epilepsy only.NOT all types.

EPILEPSYWhat are the food restrictions ? NIL – No food items causes /

cures epilepsy.

EPILEPSYWhat about education ?

YES – like any other individual.

EPILEPSYHow about employment ?

To avoid – Working near open machinery, live electrical cable, unprotected heights.

EPILEPSY Can a person with epilepsy marry ?

- Why Not ?- Marriage, sex, children – like any other

person.- Remember the person with epilepsy is

NORMAL in between the seizures.

EPILEPSYLaw prohibiting PWE from marriage repealed in UK - 1970

USA – 1980

India – 1999.

EPILEPSYWhat about pregnancy , breast feeding ?

- NO PROBLEM.- Largely neither epilepsy nor the drugs

affect the course of pregnancy / delivery / breast feeding.

- Where as, if seizures are not controlled it may result in fall, abortion, premature delivery.

EPILEPSY• Can a person with epilepsy watch TV. Use

computers ?• OF COURSE YES – They do not harm any

way.

EPILEPSY

SPORTS ?

YES - Except adventure sports E.g Rock climbing, Motor racing.

What does the LAW say ?

Driving for PWE allowed if seizure free period is

3 to 12 months - USA, Australia 6 to 12 months - UK , Canada. 1 year to 2 years - Korea, Malaysia.

Epilepsy & Driving.

Accidents due to epilepsy – 0.01%Accidents due to alcohol abuse – 5-10% in USA.

In PWE accidents due to Carelessness, alcohol - 89% Epilepsy - 11%

Epilepsy & Driving.

Epilepsy & Driving.

What about driving in India ?

- In India legally Not permitted. - However people with epilepsy do drive

merrily without mentioning epilepsy or without driving licence ! !

EPILEPSYCan we prevent epilepsy ? Yes – To some extent. - Reducing head injury - wear helmet for 2 wheelers. - wear seat belts for 4 wheelers. - Adequate antenatal care for pregnant women and ensuring safe delivery of child to prevent birth injuries to brain.

- Reducing the incidence of neuroinfections like Tape worm infection , brainfever, TB meningitis.

EPILEPSY

If a person with epilepsy can lead a normal life, why the societal attitude is so negative ?

It is due to - Prejudice, stigma Myths, misunderstanding, etc.Prevalent since several centuries

EPILEPSY

WHO NEEDS TO BE EDUCATED ?

• Patients with epilepsy• Relative of patients• General Public•  School teachers• Medical students• Doctors.

While the Recent advances have improved diagnosis & treatment, ignorance, myths, prejudices, social stigma and human suffering persists.

EPILEPSY

NATIONAL EPILEPSY WEEK – 18th – 24th December 2008 (U K)

• Our campaign this year is to combat stigma, which unfortunately still surrounds epilepsy to this day despite education that is available,

• A recent survey of 20,000 teenagers on their current belief and understanding of epilepsy.

• Almost half thought it could be contagious, almost half thought it was a mental illness and two thirds wouldn’t date someone with epilepsy.

EPILEPSY Legal Sanctions in USA

• 1956 – 18 States had statutes that provided for eugenic sterilization of PWE.

• Until 1970 – it was legal in most states, to deny PWE access to restaurants, theatres etc.

• 17 States prohibited PWE to marry in the recent past.

International Bureau for Epilepsy (IBE )

Established 1961- An organisation for lay persons & professionals interested in the field of epilepsy.

Addresses social problems- education, employment, marriage , insurance, diriving licence restrictions, public awareness.

Worldwide organisation- 118 members in 92 countries

WHEN IT COMES TO EPILEPSY EVERY COUNTRY IS A DEVELOPING COUNTRY!!

IBE – 118 Members in 92 countries

Bangalore •

• Mumbai

•Delhi

•Visakhapatnam

Cochin •

Mangalore •

•Trivandrum

•Nagpur

• Ahmedabad

•Jodhpur

•Jaipur

•Chennai

• Kakinada

•Hyderabad Shimoga •

• Lucknow

•Patna

•Ranchi

•Tirupati

•Guwahati

•Anand

• Belgaum

• Indore

•Kolkota

•Pune

Indian Epilepsy Association.

• 28 chapters

•Nellore

•Trichy

1997 – Joint Venture of IBE, ILAE & WHO

Socrates

Fyodor Dostoyevksy

Charles Dickens

Alexander The Great

Napoleon Bonaparte

Julius Caesar

Vincent van Gogh

Sir Isaac Newton

World famous Cricket players Tony Grieg

Jonty Rhodes

EPILEPSY Famous people with epilepsy -1 Agatha Christie -

- Richard Burton. - Michael wilding - Lewis carol - Martin Luther - Margaux Hermingway.

Elton John

Famous people with epilepsy –2

Buddy Bell – Baseball player

Bobby Tones - Basket ball player

Chanda Gunn – USA Olympic women`s Ice Hockey team goal keeper

EPILEPSYConclusionlet all of us join hands to improve the quality

of life of all persons with epilepsy, and integrate them into the society.

School awareness programmes

Public awareness programmes- rural