The National Epilepsy Awareness week was celebrated last September 1-6, 2014 with the theme: “EPILEPSY: TIGIL ATAKE… TULAY SA TAGUMPAY.” Nevertheless, I'd still like to join and help promote it. Below is the press release.
“EPILEPSY: TIGIL ATAKE…. TULAY SA
TAGUMPAY”
July 9, 2014
Dear Friends,
Our advocacy for epilepsy continues.
We celebrate National Epilepsy Awareness week from September
1-6 this year with the theme: “EPILEPSY: TIGIL ATAKE… TULAY SA TAGUMPAY.” In this regard, may we enjoin you to help us
in our media campaign?
For this year, the week will start off with a TRIPARTITE
SYMPOSIUM FOR NEUROLOGISTS: MARIJUANA IN EPILEPSY to be held at SULO HOTEL on
September 1, 2014. This will be a forum
among neurologist to discuss the emerging issues on Medical Marijuana and to
hopefully come out with a consensus statement on its role in the management of
Epilepsy in the Philippines.
On September 2, the 2014
Epilepsy Exemplar Awards will be held at the Crowne Plaza. This awards night gives recognition to
persons with epilepsy who have gone beyond their disease and have excelled in
either their profession or in school.
To culminate the week’s major activities, a National Epilepsy Week Camp will be
held at the Queen Margarette Hotel in Lucena City, Quezon. This is going to be a whole day affair were
lay delegates will be given lectures on epilepsy. There will be also small group discussions
that can be a venue for them to clarify issues that confront them in dealing
with the disease.
Apart
from the above activities, members of PLAE will also hold nationwide
simultaneous round table discussions, lay fora and school caravans in their
area of practice during the duration of the epilepsy week.
Also, enclosed with this letter is a press release kit which
you can use in writing articles on epilepsy which can be broadcasted or
printed. Should you need further
materials or information, you can contact us by cell phone or thru our email.
Thank you very much for your continued support throughout
the years.
Sincerely yours,
MARILYN H. ORTIZ, MD, FPPS,
FCNSP, FPNA
President
Philippine League Against
Epilepsy
(plaesecretariat@yahoo.com)
IMPACT
OF EPILEPSY
Epilepsy is present in around
1% of the global population. This may be higher in developing countries.
In a country such as the
Philippines with a population of 93 million, this means that an estimated
930,000 people suffer from epilepsy.
Local prevalence study: 230
persons with epilepsy / 100,000 population.
Epilepsy strikes most often among the
very young and the very old, although anyone can get it at any age.
The mortality rate among people with
epilepsy is two to three times higher than the general population and the risk
of sudden death is 24 times greater.
People with epilepsy can die of
seizures and related-causes, including status epilepticus (non-stop seizures),
sudden unexpected death in epilepsy (SUDEP), drowning and other accidents.
Twenty to thirty percent of people with
epilepsy are severely affected and continue to have seizures despite treatment.
Of major chronic medical conditions,
epilepsy is among the least understood even though one in three adults know
someone with the disorder.
Lack of knowledge about proper seizure
first aid exposes affected individuals to injury from unnecessary restraint and
from objects needlessly forced into the mouth.
The leading non-medical problem
confronting people with epilepsy is discrimination in education, employment and
social acceptance.
The association between epilepsy and
depression is especially strong. More than one of every three persons with
epilepsy are also affected by the mood disorder, and people with a history of
depression have a 3 to 7 times higher risk of developing epilepsy.
From studies abroad, depression is
reported by 24-74% of patients with epilepsy; anxiety in 10-25%.
Around 64% of people with epilepsy in
the Philippines suffer from anxiety and 51% from depression.
Living with epilepsy presents
challenges affecting many aspects of life, including relationships with family
and friends, school, employment and leisure activities.
FACTS and FALLACIES ABOUT EPILEPSY
It is a
mental condition and leads to insanity.
Fact: Epilepsy is a brain condition
characterized by recurrent seizures. Seizures are sudden, brief abnormalities
of behavior, thought, movement or sensation generally lasting for a few
minutes. Seizures are caused by a hyperactive, disorganized electrical activity
from the brain.
Although psychosis may be found in only
2-7% of persons with epilepsy, it is the exception rather than the rule.
It is
caused by spirit possession or “pagsasapi”.
Fact: Although movies, literature and
folklore refer to seizures as arising from a spirit possession because of some
similarities in their manifestations, seizures can be documented scientifically
as abnormal brain activity on EEG, unlike demon possession. Seizures are not
dealt with by exorcism or prayer; only by medications and in other cases, brain
surgery and a special diet (ketogenic diet, doctor prescribed).
It is
contagious or can be inherited. In the past decades, this
fallacy has caused many patients with epilepsy to be shunned from society and
from pursuing marriage and having a family.
Fact: Many conditions can cause
epilepsy. In a small number of patients (10-15%), the susceptibility or
predisposition to develop seizures may be inherited. However, for the most
number of patients, it can be due to other brain insults. It may happen in
those with a history of head injury. It may also happen to those with hypoxic
brain injury sustained from a birth complication ( lack of brain oxygen in the
baby during child birth – ex. due to coiled cord around neck of baby, difficult
labor, maternal complications leading to fetal distress). It may also result
from an infection of the brain (meningitis, encephalitis), brain tumors,
strokes, prolonged convulsions in childhood. The cause may be unknown in around
40% of cases.
This leads us to another interesting
question:
Can
Epilepsy be Prevented?
Many
cases of epilepsy can be prevented by wearing seatbelts and bicycle helmets,
putting children in car seats, and other measures that prevent head injury and
other trauma. Prescribing
medication after first or second seizures or febrile seizures also may help
prevent epilepsy in some cases. Good prenatal care, including treatment of high
blood pressure and infections during pregnancy, can prevent brain damage in the
developing baby that may lead to epilepsy and other neurological problems
later. Treating cardiovascular disease, high blood pressure, infections, and other disorders that can affect
the brain during adulthood and aging also may prevent many cases of epilepsy.
Finally, identifying the genes for many neurological disorders can provide
opportunities for genetic screening and prenatal diagnosis that may ultimately prevent many cases of
epilepsy.
Epilepsy
patients are retarded.
Fact: This is a misperception because epilepsy is highly prevalent among
other disability groups such as autism (25.5%), cerebral palsy (13%), Down
syndrome (13.6%) and mental retardation (25.5%). However, if one looks at the
entire population of people suffering from epilepsy, majority of them have
normal IQs, are able to go to school and sustain gainful employment.
Patients
with epilepsy shouldn’t get stressed so they should not study or work or
indulge in sports and leisure activity.
Fact: The relationship between the
occurrence of psycho-mental stress and seizures is at present unstudied.
Patients associate stressful periods with an increase in seizures. Many experts
believe it is the effects of stress such as disturbed sleep and missing meals
and medications that bring about an increase in seizures rather than the
psychological or mental preoccupation itself.
The fact that there are philosophers,
world leaders, artists, writers, politicians and athletes who have epilepsy
prove that epilepsy should not pose a limitation to mental and physical
activities.
Patients
with epilepsy shouldn’t get married because they might pass on their epilepsy
to their children. (See above on epilepsy and
inheritance.)
When a
patient starts to have a seizure, the best first aid is to stick a spoon inside
his mouth.
Fact: When a person goes into a seizure,
there are very powerful muscle contractions that suddenly cause him to fall,
stop breathing, bite his tongue and clamp his jaw. Inserting an object into his
mouth has been found to be more detrimental to the patients and has caused
dental fractures, mouth lacerations and suffocation. It is not encouraged.
Rather, one should 1) cushion the
patient’s head with a soft pillow, 2) loosen his clothing around the neck, 3)
remove harmful objects around him which can hurt or injure him, 4) turn him to
his side to prevent suffocation and allow drainage of saliva and 5) time the
seizures. If seizures last 5 minutes or more or the patient has been injured,
the patient should be brought immediately to the emergency room.
Antiepileptic
medications are toxic (“ naluluto ang utak”) and should not be taken for a long
time.
Fact: Epilepsy is a chronic condition and needs long term
intake of antiepileptic drug, the minimum of which is 2-5 years, depending on
its cause. Patients are always advised to take their medications daily to
prevent seizures from recurring each day. There are minor side effects with
long term intake, esp. on the bone, cognition, blood elements or liver but
these can be monitored by the doctor on regular follow-up.
TREATMENT
Epilepsy should be accurately diagnosed
so that an effective treatment can be given.
Diagnosis is by a good clinical
evaluation from a doctor who is familiar with the disease. In addition, other
tests like an EEG (electroencephalogram, recording of brain waves) may be
requested to confirm and classify the epilepsy; as well as a CT Scan or MRI of
the brain, to find out what is causing it.
Once epilepsy is diagnosed, it is
important to begin treatment as soon as possible. Research suggests that
medication and other treatments may be less successful in treating epilepsy
when delayed and when seizures and their consequences have become established.
Doctors who treat epilepsy come from
many different fields of medicine. They include neurologists, pediatricians,
pediatric neurologists, internists, and family physicians, as well as
neurosurgeons and doctors called epileptologists who specialize in treating
epilepsy.
People who need specialized or
intensive care for epilepsy may be treated at large Epilepsy centers (at St
Luke’s Medical Center, Makati Medical Center, Philippine General Hospital,
Medical City, Philippine Children’s Medical Center) and neurology clinics at hospitals or by
neurologists in private practice.
An EEG costs from between 800- 2500
pesos; while an CT scan costs 5,000- 6,000 pesos; an MRI 7,000 – 12,000 pesos.
Medications and other treatments help
manage seizures. More than 12 different antiepileptic drugs are now on the
market in the Philippines, all with different benefits and side effects.
The choice of which drug to prescribe,
and at what dosage, depends on many different factors, including the type of
seizures a person has, the person’s lifestyle and age, how frequently the
seizures occur, and, for a woman, the likelihood that she will become
pregnant. People with epilepsy should follow their doctor’s advice and
share any concerns they may have regarding their medication.
For most people with epilepsy, seizures
can be controlled with just one drug at the right dose.
Using too many drugs in combination can
worsen or aggravate side effects such as fatigue and decreased appetite, so
doctors usually prescribe monotherapy, or the use of just one drug, whenever
possible. Combinations of drugs are sometimes prescribed if monotherapy
fails to effectively control a patient’s seizures.
Patients have to take medications 1-3x/day, everyday, for several years and other
cases, for their lifetime.
Most side effects of antiepileptic
drugs are relatively minor, such as fatigue, dizziness, or weight gain.
However, severe and life-threatening side effects such as allergic reactions
can occur.
Epilepsy medication also may predispose
people to developing depression or psychoses. People with epilepsy should
consult a doctor immediately if they develop any kind of rash while on
medication, or if they find themselves depressed or otherwise unable to think
in a rational manner.
If seizures are controlled within 2-5
years of medications, medications are eventually tapered and discontinued upon
the advise of the doctor.
Some 20-30% of patients continue to
have seizures that impact their daily lives
in spite of medications.
People taking epilepsy medication
should be sure to check with their doctor and/or seek a second medical opinion
if their medication does not appear to be working or if it causes unexpected
side effects.
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