Epilepsy is much more disabling than acknowledged - it impacts a
child's learning years, a person's professional and marital life and also gives
the patient a sense of insecurity - with the doubt "what if I have a
seizure" always persistent, says an expert on the disease.
According to Mamta Bhushan Singh, associate
professor, department of neurology at the All India Institute of Medical
Sciences, "Epilepsy impacts all relationships, especially the marital life
of a patient."
"There is a reluctance of parents to talk
of the illness while fixing up the marriage of their child. If a husband comes
to know his wife is a person with epilepsy, it is frequent for the woman to be
thrown out, irrespective of whether she is mother to his child," Singh
told IANS in an interview.
"The sense of shame and insecurity among
persons with epilepsy has to be addressed," she said.
Singh, who attends to patients in various parts
of India as part of the Lifeline Express, the world's first hospital on a
train, said she has come across many cases of children in Delhi's schools being
thrown after having a seizure.
"The schools tell the child, "Come
back when you are cured". This is appalling, and shows lack of
awareness," she said, adding that she was planning to visit schools,
especially government ones, to create awareness among teachers and staff about
the neurological disorder.
India has 12-14 million people with epilepsy, or
a fifth of the world's 50-60 million cases.
However, the treatment gap in India is huge at
70-90 percent. "This means that out of every 100 patients, 70-90 people
are not getting treatment. These are WHO figures," said Singh.
In India, 10-12 per 1,000 people belonging to
the young productive age - when they should be studying, learning life skills,
are affected with epilepsy, she informed.
Patients are generally unaware of the many
side-effects of anti-epilepsy drugs. Most of the drugs have a bad effect on
bone health, cause weight gain, and drowsiness, Singh said.
"There have been hundreds of studies that show
that anti-epilepsy drugs impact bone health, and the vulnerable age group are
growing children, the elderly and pregnant lactating women."
She advises that patients should take adequate
exercise, have adequate sun exposure and take vitamin D and calcium
supplements.
Due to the long-term medication, which in many
cases is life-long, the bones of patients become weak, and osteoporosis -
thinning of bone density and bone tissue - and osteopenia where the bone
mineral density is lower than normal, sets in, Singh said.
"As a population we have poor bone health,
and in epilepsy patients it is more. Children who are under
medication, show up bone complaints years later," she said.
One of the chronic side effects of anti-epilepsy
drugs is weight gain.
Due to epilepsy, the children are more
restricted in sports and also more likely to go into depression. They either
eat too much or less, or binge on eating. They put on weight, and then because
of heavier build, their per kg requirement of medication increases. It is a
vicious cycle, Singh said.
"Children might develop personality
disorders. They are more likely to become insecure. The niggling doubt of
people with epilepsy is - "what if I have a seizure in the workplace or
class"?
"It is important to be vigilant -
anti-epilepsy drugs are likely to continue for many years. The drug related
side effects, and behaviour issues should be taken into consideration,"
she stressed.
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