Diagnosis – The Realities

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Finding myself a little behind in my blog ‘kick off’ time (most appropriate with the World Cup having finished yesterday!), ironically the delay has provided me with today’s subject matter.

Since my diagnosis of epilepsy at the age of three I have known nothing else.  Life progressed with changes in my condition being dealt with and moving forward.  Decisions had to be made taking into account what the doctors advised was in my best interest along with consideration for my parent’s choice of what they felt was best knowing me as a whole.  In hindsight, my mum did a flawless job in her decision making, plus all the love and support she and the rest of my family provided me with.

As I got older, I thought about my ability to drive in the future.  I counted down the years getting excited at the prospect of learning how to drive, getting a car and gaining more independence.  I’m sure sub-consciously I had acknowledged it but I never really thought that driving would be something I couldn’t do.  I remained positive and continued to count down the years.  Seventeen came and went and it was only in my early twenties did I realize driving would probably not be an option for me.  I have always made my way on public transport and England has a great transport system, (as much as I would grumble about delayed trains, buses etc.!) as has the US and Canada.  Good transportation has dictated where I live; with the need to be independent, towns and cities are ideal for me.  As much as I love nature, (and I truly do) I am a city girl at heart.  I thrive on the people, the focus, getting from A to B, the ability to remain anonymous and even, dare I say it, the insular attitudes on the bus or train which many find a negative.  Depending on my destination, particularly if I’m off to work, I like the opportunity to be with my own thoughts in preparation for the day ahead.

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I count myself as one of the lucky ones.  ‘Why?’ you may ask, well with a diagnosis at three I have known nothing else.  Living life with epilepsy has me prepared for the unexpected, ready to to catch whatever life throws at me throwing it right back and giving it a run for its money.  However, if you have a ‘normal’ childhood and continue in the same vein into your teenage years without restrictions if your first seizure happens out of the blue in your teens or later life is partially or fully established.  Therefore, the diagnosis at that stage I think is harder to deal with.

A diagnosis of epilepsy will be overwhelming, a shock and likely to turn your life upside down.  It will be a challenge to get your head around, let alone conquering acceptance.  Life will require a review and adjustment potentially bringing your independence into question.  Driving, if able, is the one factor I am told that can be one of the most difficult life changes, particularly if it is work reliant.

If one seizure occurs, a diagnosis of epilepsy will not be given immediately.  It is only after two maybe three seizures that a diagnosis is issued; however, many go years before reaching that point.  Having your first seizure is frightening; the necessity to face more can generate a great deal of fear not only for the person experiencing the seizure but also for those who are responsible for their safety and care.

Seizure type will dictate the life modifications that will need to be made.  This can include living arrangements, employment and driving; studying, pregnancy, drinking and socializing amongst others.

However, adapting to epilepsy does not always have to be as challenging as it may seem.  Life can still be lived to the full and I am living proof.  In this day and age the research that has been undertaken offers so many options for seizure control dependent on seizure type.  There are twenty five different AED’s which have been approved by the FDA (Food & Drug Administration) and it’s the first method tried for control.

If one AED is unsuccessful, there are others to try alongside combinations which can be extremely effective.  If you are ‘refractory to treatment’, the term given to somebody who does not respond to medication, there are other options.  I will cover this in greater detail in my next post but they include the Vagus Nerve Stimulator, Ketogenic diet or brain surgery, if you are an appropriate candidate.

Having touched on the diagnosis of epilepsy with brief coverage of some of the considerations that accompany it, I have included a number of useful links below for further information.

https://www.youtube.com/watch?v=pZHKfXAWVvI

http://www.epilepsysociety.org.uk/just-diagnosed#.U8RuyPnMSAg

https://www.epilepsy.org.uk/info/employment/transport

https://www.aesnet.org/clinical_resources/practice_tools/employment_resources

http://www.nhtsa.gov/people/injury/olddrive/Seizures%20Web/

https://www.epilepsy.org.uk/info/law

 

 

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