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A Mountaineer, Painter and Teacher Prove Life Goes on After Epilepsy

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Marking National Epilepsy Day last week, 3 Mumbaikars living with the disease share the effect it has had on their lives and the determination to succeed that spurred them to fight and conquer it

Epilepsy, which affects about 1 per cent of the population, is one of the most poorly understood diseases in India. Caused by a viral infection that spreads to the brain, the disease can affect anyone at any stage of life.

Experts say that over the past two years, the incidence of epilepsy has increased significantly; they attribute this rise to the increasing number of head injuries from road accidents and the consumption of uncooked meat and vegetables — both risk factors for for the infection that causes epilepsy.


16-yr-old undergoes brain surgery while awake and humming songs

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The challenge with epileptic Arvind was to remove focal point of seizures, while retaining part of brain that gives him musical cognition

While doctors wielded the scalpel and manoeuvered through parts of his brain, 16–year–old Arvind Mohan Kumar was singing away in the operation theatre. In a rather unusual method to rid the teenager of epilepsy while simultaneously saving his exceptional musical abilities, a team of doctors at Nimhans used a first–of–its–kind technique to operate on the boy while awake, using only local anaesthesia.


Genetic Trigger for Epilepsy Discovered

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Researchers at the University Department of Neurology at the MedUni Vienna have identified a gene behind an epilepsy syndrome, which could also play an important role in other idiopathic (genetically caused) epilepsies.

With the so-called “next generation sequencing”, with which genetic changes can be identified within a few days, it was ascertained that the CNTN2 gene is defective in this type of epilepsy.


95% epileptics don’t receive treatment, says study

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Times Of India
01 October 2012
New Delhi, India.

Nearly 95% people with epilepsy in India don’t receive any treatment. Anti–epileptic drugs aren’t available to almost 50% patients in the public sector with less than 40% actually receiving generic medicines instead of the expensive branded ones.

Neurocysticercosis (parasitic disease of the nervous system) is responsible for about 30% of seizure disorders in the Indian subcontinent. Epilepsy is often associated with substantial stigma, with most people with epilepsy less likely to be sent to school, find employment or marry. Around 14 people per 1,000 population (median lifetime prevalence) are expected to suffer from epilepsy in countries like India with higher estimates in children and young adults, and in rural areas. These are the findings of a study by University of Oxford and published in the British medical journal The Lancet on Friday. More than 85% of the global burden of epilepsy occurs in low–income countries including India.


Brain surgery brings relief to epilepsy patient

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The Hindu
16 july 2012

Chairman of Kovai Medical Center and Hospital Nalla G. Palaniswami (second right) explains the epilepsy surgery done on V. Raj Prabhu (second left) in the city on Saturday. Photo: K.Ananthan

V. Rajprabhu had to discontinue his engineering course and take up job catering job. But, he had to quit his job soon because of severe seizures. He was on multiple anti–convulsion drugs but, they were not of much help. The patient was identified with left temporal lobe sclerosis and required the removal of a scar in the brain to check seizures.


Surgery Helps Epilepsy Patients Lead Normal Lives

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DNA India
23 November 2011
By Alifiya Khan
Pune India

Two years ago, Shalini Raman (name changed on request) sat down with her doctor to learn about the side effects of a complicated brain surgery to be performed on her.

Ostracised for getting frequent fits, the 18–year–old had been suffering from epilepsy since her teenage and was fed up of being ridiculed by her peers.

Shalini was so traumatised by her condition that she didn't think twice before agreeing to the surgery even though she was told about a rare side effect of the surgery– paralysis.

Today, the management student has no regrets about her decision to go ahead with the surgery; it has been two years and she has not suffered a single epileptic fit since the surgery. Shalini is not alone, there are many patients like her and the number of success stories is going up every day, say doctors.

"The goal of epilepsy surgery is to identify and remove an abnormal area of the brain from which the seizures originate. The goal is to eliminate seizures or reduce the burden of epileptic fits. About 70% of epileptic patients respond to anti–epileptic drugs, but 30% of the patients do not. About a third of these patients can be helped with surgical procedure," said Dr Nandan Yardi, epileptologist and president of the Indian Epilepsy Association (Pune chapter).

"With the help of specialised techniques and detailed examinations, the area in the brain responsible for epilepsy is localised and mapped out. An epilepsy surgery is then performed to remove the part of the brain responsible for epilepsy," said neurologist Avanti Biniwale.


Epilepsy Patients Should Have Surgery Sooner as op 'Leaves Half Seizure-Free For More Than a Decade'

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Daily Mail
14 October 2011
By , Claire Bates

  • Scientists followed 615 post–surgery for 19 years
  • Calls for clinical practice to change after study results
Epilepsy sufferers who cannot control their condition with drugs should be referred for surgery sooner, according to researchers.
Scientists at University College London found almost half of people with the life–affecting condition are left seizure–free for ten years if they undergo a brain op.

Epilepsy Patients Should Have Surgery Sooner as op 'Leaves Half Seizure-Free For More Than a Decade'
Their report, published in medical journal The Lancet, suggests surgery could be an effective alternative for the third of patients who don't respond to costly drug treatment.

In the first long–term study of post–surgery epilepsy patients, researchers followed 615 patients for up to 19 years following surgery.

They found 82 per cent of them were seizure–free after one year, 52 per cent recorded no seizures after five years and 47 per cent still hadn't suffered an episode after a decade.

Study leader Professor John Duncan said: 'If the seizures aren't controlled with medication, that's where surgery should be considered.

'In those people, surgery has a good chance of stopping the seizures.'

Prof. Duncan and other experts said that in the light of their findings, it was important to improve pre–surgical assessments so that suitable patients could be offered surgery sooner.

The study found that the average period an epilepsy sufferer had the condition before surgery was 20 years.


T S Srinivasan Lecture on Neuro Diseases

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18 February 2011
Chennai, India

T S Srinivasan centre for clinical neuroscience and health policy has chosen heredity in neurological diseases as the theme for its 31st oration to be held on Saturday.

The TS Srinivasan oration on "Heredity as the cause of neurological diseases: the example of epilepsy" will be delivered by Simon Shorvon of University College, London. He is co–editor the journal Epilepsy and the author of more than 350 scientific papers. The oration will be followed by a congress bringing together 14 experts in epilepsy across the globe. The deliberations during the congress would be compiled into a book Epilepsy – A Global Approach.

Pointing out that a majority of the scientific literature in epilepsy has come from developed countries, Dr E S Krishnamoorthy said the congress would help to dispense expertise on epilepsy amongst Indian doctors. "We have 5 million in the country suffering from the disease (epilepsy), therefore we decided to chose it as the theme of the oration," he added.

Briefing media persons Simon said, "there have been tremendous advancements in our knowledge and understanding of epilepsy over the last three decades. The oration would trace the history of understanding the genetics of neurological disorders.


Epilepsy Drugs Don't Harm IQ of Kids

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Epilepsy drugs don't harm IQ of breastfed babies (Thinkstock photos/Getty Images)Epilepsy drugs don't harm IQ of breastfed babies (Thinkstock photos/Getty Images)
Breastfeeding a baby while taking a seizure medication may have no harmful effect on the child’s IQ later in life, according to a new research from the Emory University School of Medicine.

"Our results showed no difference in IQ scores between the children who were breastfed and those who were not," said study author Kimford Meador.

"This is very good news for the many women who must take medication to avoid dangerous seizures and are worried about the possible risks of the drugs on their child if they breastfeed versus the many known benefits that come with breastfeeding their babies," added Meador.

Breastfeeding has been associated with decreased risks for heart disease, diabetes, and obesity in the child, and breast and ovarian cancer in the mother.

The study followed 194 pregnant women who were taking one epilepsy drug.

Of their 199 babies, 42 per cent were breastfed.

The children were given IQ tests at the age of three, and those who were breastfed scored an average of 99 on the test. Those who were not breastfed scored an average of 98, which according to Meador is not a significant difference. The mean IQ in the general population is 100.

The women were taking either carbamazepine, lamotrigine, phenytoin or valproate. The children whose mothers were taking valproate had lower IQ scores, regardless of whether or not they were breastfed.

"This is one of the first large scale studies related to epilepsy drugs and breast milk, but we know more research is needed on the effects of other drugs for epilepsy, especially some of the newer ones," said Meador.

Meador says AAN guidelines recommend that if possible women should avoid taking more than one epilepsy drug at a time during pregnancy since taking more than one drug has been found to increase the risk of birth defects compared to taking only one medication.

AAN guidelines also recommend that valproate be avoided during pregnancy due to risks of birth defects and effects on cognitive skills.

The study has been published in the November 24 online issue of Neurology , the medical journal of the American Academy of Neurology.

Times of India
25 November 2010

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