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17 Year Old Hydrocephalus Disabled Irena Seeks Government Grant Or Benefits

by Irena Karbauskaite
(Magherafelt, Londonderry, United Kingdom)

My name is Irena, and I am 17 years old. I live at home with my mum and dad. I will be finishing school this year. I hope to go to college next academic year.

My parents found out that I had hydrocephalus when I was 10months old.

Since then I have had a number of operations which included putting shunt into my head to allow the water that was produced to get out of the brain.

However, back in the 1994 hydrocephalus was not a widely known condition in Lithuania so it took doctors there some time to recognize the actions that needed to be done.

Over that time my head increased significantly before they have decided to undertake the operation.

When I started walking at about 3 years old, doctors noticed that I had problems, as both my feet were not touching the ground properly.

It was as if I were wearing heals whenever I walked, except I wasn't.

It took about another 2years of checkups and further operations before the doctors were finally happy with the way I walked.

When I was 8 years old I felt really ill and was taken to hospital. It turns out that the shunt I had put in when I was a baby became too short so they had to change it.

As well as the number of operations, whenever I went to school I was never been accepted because of how I looked and walked.

Even if medically my condition was stable, people around me could still see that I was different so I experienced a lot of bullying.

In 2009 my mum and I came to United Kingdom.

Over my time here I started going to school, which was not much different from back home; I was discriminated and felt excluded.

In 2010 I felt unwell again. Doctors attempted to make it better by medication that relieves the pressure on the brain.

After much medication and many scans, doctors decided to change my shunt for the third time, because they were sure it was blocked and was not functioning properly.

Because of the shunt being put in at the right side of my head, it was always blocking the nerve of the right eye, which has made that eye almost completely blind, and because of the pressure put on the left eye it is constantly getting worse too.

This makes me wear glasses all the time that need to me changed every year.

I almost constantly have low blood pressure, which makes it very hard for me to complete any physical tasks like ironing or vacuuming, because it causes me to get tired and out of breath, very quickly.

In the past I had to take a lot of medication for reducing brain pressure and improving the heart.

I am a student at the moment and I don't work. However, I used to have a part-time job, which I had to give up because of my illness.

I'm looking for any kind of grant or benefit that will help me deal with my condition and the costs connected with it.

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