For University research

[zoecooper]

Hello, my name is Zoe Cooper and I study BA Product Design.

For my latest brief we get the opportunity to design a product or service related to a long-term disease/illness. It would be much appreciated if you could take the time to answer a few questions for my research.

What are the most common or personal daily struggles of living with Epilepsy?

How do you think this could be resolved?

If there are services or products already available to you, what are they and how affective are they?

For parents:

What are the daily struggles of having a child with Epilepsy?

What are your greatest concerns in terms of their safety?

Thank you!

[Hidden]

Hi Zoe,

Thank you for your message and for trying to do more research. Wishing you well on this project.

I have had epilepsy for 42 years now but life goes on.

My most common or daily struggle of living with epilepsy is not driving. I had a seizure whilst driving at 17, so stopped myself. I miss being behind a steering wheel and have to rely on my husband or others for transport. I live in South Africa and there is a very poor transport system. No buses are available.

Services and products are great if they work but each person has a different type of epilepsy and there are so many different types of seizures. Again, here in South Africa, products are limited and if available, too expensive for others to purchase. We don't have the proper professional Doctors or Neurologists even to visit, so rely mostly on Government Hospitals.

Obtaining medication is hard enough and some can't even get it, so they suffer with seizures regularly. I am one of the lucky ones that gets medication monthly.

Wishing you all the best and keep us posted.

Regards,

Les

[Hidden]

You are welcome to communicate with me via email too if you wish... Email address is [e-mail]

[MedicalAngel]

Hi

I was diagnosed last August so I'm newly diagnosed.

The most common or personal daily struggles of living with Epilepsy are:

I lost my front line career in the emergency service.

Losing my driving license and consequently my independence is a struggle.

I was totally an independent person before who could handle anything, but now I rely on others for many things.

Taking 6 medications each day (2 lots of Anti Epileptic Drugs - AEDs) is a struggle especially as I don't favour taking any drugs.

The drugs make me feel and act odd (or might be the brain injury I've got - difficult to tell) so people think I'm a bit drunk or have mental health issues or put on some wobbly legs for the day.

Memory is crap, verbal filter is off - apparently - & I get very frustrated very quickly. Not the me I used to be.

Adapting to this life changing condition takes a bit of getting used to. Depression has also popped it's head up. Two more drugs included in to the pile of the day.

Ive not given my condition or situation any chance to think how it could be resolved.

The service I use is Headway which is brilliant. They listen and understand which is exactly what I need. They have a helpline which is exceptiona. My friends (where there are less and less) and family don't understand so any service and person who does is golden.

The only products I have are the AEDs and Epilepsy Society phone app which helps me record my daily seizures. There's more to the app than that. The Epilepsy Society has a helpline which is managed by epilepsy nurses and I can't tell you how fab that is.

Hope this helped x