Share this

The Neurodiversity Advocate

PoojaEpilepsy

Here is Pooja, a vibrant entrepreneur, who gracefully navigates life’s unpredictable twists while managing epilepsy. Join her as she champions awareness, offering a glimpse into the daily triumphs and tribulations of those living with this condition. Discover the nuances of epilepsy through Pooja’s eyes, in a society that often misunderstands epilepsy. Her powerful message echoes beyond the screen – epilepsy is just one chapter in an individual’s life, not their entire story.

Transcript

Epilepsy is a huge spectrum.

So, even a child can have epilepsy, even one can get epilepsy at the age of 70.

So there is a formula that typically doctors follow, that if you don’t get a seizure or an attack for 2 years or more than 2 years, then they start decreasing the medication and then they kind of put you off in medication.

But that’s something that is very very individual and that totally you have to work hand in hand, in partnership with the neurologist you are consulting.

*
(Music)

I’m an entrepreneur and a housewife.

I have a lovely husband and a 13 year-old son.

As per the World Health Organization, typically one in a hundred people faint, or get like you know chakkar, syncope, maybe due to being under the sun or whatever.

That is one in a hundred people but one in two hundred people typically get seizures and mostly are diagnosed with epilepsy, mostly.

Now it is the largest disorder, neurological disorder after migraine.

So, the numbers are that big.

But because of the stigma attached to it, nobody speaks about it.

Typically, a lot of times epilepsy happens because you know, of birth injuries, or people fall or have accidents, or due to trauma to the brain, but mine is something… there was no reason.

I just happened to get a seizure one day.

And the first time my parents thought, ‘maybe this is due to something’, gave me medication, took consultation from the local doctor, but then when that became repetitive, is when we saw a neurologist.

And there is a test called EEG that needs to be done to see if the person has epilepsy or no.

So, my test was done and then of course I got diagnosed with epilepsy and then I was put on medication.

I was diagnosed at the age of 13.

But you know, I think my parents were not as rattled.

So, firstly, they didn’t tell me that I have some mega issue in life.

They just said, whatever it is you’ll have to take medicines and life continues as is.

I’m on Valproate right now, I’m on Valproate.

When I was just first put on the medication I was still put on Valproate only.

And I took that medicine from the age of 13 till the age of 28.

Now why did I change the medicine at 28?

Because I had, I wanted to plan a family.

Now with that drug, what happens is, there is a chance that the fetus could have a problem.

So that’s a potential side effect of Valproate.

So what we actually had to do is, my doctor, my neurologist and me, we actually did a journey of four years where we went through a whole cleaning process of the drug that was in my system.

We started me on a new drug, we slowly increased that drug and then I conceived.

So, everything is possible, one just needs to consult the neurologist and walk the journey with them.

But the most important thing is, different drugs have different side effects on different people because every body type is different, every epilepsy is different and how every drug reacts to different people is different.

So the expert who is a neurologist is the best person to guide you on this.

And you know people generally think that a typical seizure is when the entire body of a person moves violently, and the person falls down, that typical, that ugly looking thing, is only a seizure.

But that’s not true.

Sometimes people have these blank spells, a lot of times hands keep just going and anything that is not in your control that happens, is a seizure.

An onlooker will not realize it and I am going through it, so I am also not realizing this because I blanked out, right?

But it’s very important that you know, if any kind of behavior is repeated, which typically people think is a little off, it’s always good to consult a doctor.

Because a lot of these things like blank spells, constantly you know, moving hands, just getting lost, a lot of this is different types of epilepsy.

And mine is a Juvenile epilepsy where I faint and I get those horrid seizures when I fall and I mostly hurt myself.

*
As a person who constantly gets seizures, if I have fallen in the bus or on the road, it is extremely important that people help me because I would otherwise hurt myself really bad.

So, all they need to do is just make me comfortable.

Put me in a place where I will not hurt myself because I’m banging my head very hard because I’m going lie this (shaking).

They just need to make me comfortable, in about 2 minutes, 3 minutes, once I am comfortable, I'll relax, and then I will gain consciousness and I will tell them what to do.

But please please please do not put water in the mouth, do not put anything - do not stuff anything in my mouth, do not put ‘Kanda’ (onion) ‘Chappal’ (slipper) ‘Chabi’ (keys) because what typically happens is when you’re stuffing something in the mouth, I have clenched my teeth.

Don’t put your Ungli (finger) also in my mouth, because I will end up biting you, I will end up biting myself.

There are times if you put water in my mouth, it will go into my lungs which will cause more problems.

So there are times when the seizures will become fine, but its the after, the first aid that was done, which was basically done with good intent, but you know, because it’s not the right thing to do, it did cause a lot of problems.

Most women who have epilepsy find it difficult to find partners because you know, when they tell the person that they have epilepsy

The beauty about epilepsy is if I don’t tell you, don’t disclose, you won’t know I have epilepsy.

So for people, when they say they have epilepsy, the person in question does not want to go ahead with a marriage.

This is because of fears like, ‘What if we cannot have a child?’ or ‘What if the kid also has epilepsy?’ or a mindset similar to, ‘What if the person gets a fit, why should we take care of them?’ or ‘How would we take care of that person?’

But that’s not the case, you know, as persons with epilepsy take care of themselves, because it’s like blood pressure or diabetes. One needs to just take medicines every day and consult your doctor once every six months.

What is the big deal here? People with diabetes and blood pressure do this every day.

So, I don’t understand why we have to live with this ‘I have epilepsy’ thing you know. It's fine, if you have epilepsy, what difference does it make? Life continues.

Epilepsy is only a part of you. It’s not you. You are much more than that.

*
Since 2018, I work with an NGO called Samman, where we work with persons with epilepsy and right now I’m the treasurer of Samman. Thank you.

More Videos

Familiarize yourself with and expand your vocabulary of disability-related terminology! 
P - Persons with disabilities
S - Sense of belonging
Z - Zero barrier
P - Parental involvement
crossmenu Skip to content
Send this to a friend