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Emma would like to increase the awareness of epilepsy

Created:

21 November 2018

About her epilepsy:

Emma was diagnosed with epilepsy three years ago, but has been seizure free for around a year. She has recently started doing some volunteer work with epilepsy charities such as Epilepsy Action doing awareness presentation training in schools and workplaces and is currently undertaking an accredited volunteer position with them. However, she is keen to expand her volunteer work into sharing her story and is keen to help with raising awareness in any way she can.

Her seizures link to her menstrual cycle and she has had a few in her sleep. She has also had focal seizures where she sees an aura beforehand so she knows it's about to happen, and complex seizures that she does not remember. She has had a tonic-clonic seizure once and when it was over, she was so scared as she did not know what had happened to her.

In her job as a freelance designer means that she presents concepts to colleagues and clients so she is confident in getting her ideas across and clearly and concisely. Therefore, feels comfortable talking about her diagnosis.

Impact on her life:

In the past, Emma's epilepsy has had a negative impact on her life, as the epilepsy and her epilepsy medication (Amoxicillin), have had an impact on her brain and memory.

As she is a creative person, she has an interest in the link between epilepsy and creativity and would like to learn more about the link between the two. She is also keen to learn about the effect of epilepsy and its medication on people's ability to produce creative work.

When she had a few seizures at work, her colleagues knew she was having a seizure because she started talking nonsense and drooling. They were helpful as they made sure she got home safety after calling her emergency contact. Emma is sometimes aware of her seizures, but sometimes she's not. Despite this, Emma does not let her condition define her, and leads a normal life.

Time to talk:

Emma wants to show the public that epilepsy is not as scary a subject as it seems, despite the amount of stigma and misunderstanding surrounding the condition. She is amazed at how common epilepsy is in the general population, with 1 in 100 people having epilepsy.

Due to this, she believes it is about time we started talking about epilepsy more and to make people more aware of the condition, as she believes it is likely that everyone unknowingly has friends and colleagues who have also been diagnosed. When she worked at her previous job with 250 colleagues, there could have been at least one other person there who had epilepsy, but she did not know.

Emma believes that it is a myth that photosensitive epilepsy is the main type of epilepsy as some people's seizures can occur from flashing lights and strobe lighting. However, it affects as little as 3% of people with epilepsy.

Looking towards the future:

Emma thinks that it is important for people to have the ability to be seizure free in terms of future treatment and genomic research. She also believes loosening up medication, such as the prescription of medicinal cannabis now being available to severe epileptic patients on the NHS, will have a positive effect. However, she would like the pharmaceutical companies that make anti-epileptic drugs to produce different medication that does the same job, but with less side effects.