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How do you tell people that you have epilepsy? Irish app aims to help

Many people with the condition say they find it difficult to decide who to tell, and how to go about it.

A NEW APP and website, now available to those who suffer from epilepsy, offers advice to patients on how to tell family and friends about their condition.

The app is aimed at Irish people who have been recently diagnosed, but it also offers advice on how to tell work colleagues, which would be relevant to all those who suffer from epilepsy.

In an Epilepsy Ireland study, 29% of respondents said they did not feel comfortable telling friends and family members they have epilepsy – and 56% were not comfortable telling their employer and work colleagues.

In Ireland, epilepsy is experienced by over 37,000 people.

Although epilepsy is most commonly identified by seizure episodes, it’s quite a complex neurological condition that can affect people in many different ways and not everyone has seizures.

Anyone can have a seizure if the brain is exposed to a strong enough stimulus – those with epilepsy are described as having a “lower” threshold for what a strong stimulus is.

For most people, epilepsy will only affect them for a short period in their lives; but for others the consequences can be more lasting.

How the ‘How2tell’ app was created

Researchers from the School of Nursing and Midwifery in Trinity College Dublin have been working with Irish people with epilepsy to come up with advice on how to tell people of their condition – or whether they need to tell them at all.

Building on this research, which was funded by the Health Research Board and Epilepsy Ireland, they have developed a new website, app and booklet, called How2tell that will support people with epilepsy in both personal and professional situations.

The How2tell tools feature the “voices of real people with epilepsy” using videos and quotes to present their voices. It is hoped that the app will help people adapt to living with epilepsy.

Based on their experiences of telling in different situations, the app gives advice on the following issues:

  • Becoming comfortable with ‘your’ epilepsy, as everyone’s condition is different
  • How to decide why you might tell someone about your condition
  • Weighing up who needs-to-know and when to tell them
  • How to get ready for telling someone about your condition
  • Tailoring the message to different audiences
  • Telling people to make it an ordinary occurrence, and dealing with other people’s reactions.

In its “Why Tell” section, the website advises people that informing those around you about your condition is helpful for a number of reasons. Among these is increasing your safety so that if you have a seizure, those around you can react.

Other reasons include strengthening relationships, developing a support network, and reducing alarm.

SNM Trinity College Dublin / YouTube

Dr Naomi Elliott, an Associate Professor of Nursing at Trinity and lead researcher on the How2tell project said that the app was created out of an “absence of practical knowledge for adults with epilepsy” on how to tell people about their condition.

She told that it was an important knowledge gap to fill as one of the key issues about why those with epilepsy are uncomfortable telling others about their condition is they’re “unsure about how people are going to react”.

“And you don’t tell people once – you tell people over and over again,” she said.

[The app] took the fear or anxiety out of it – the way it was done was really important; using the right language and taking the right opportunity, as well as also identifying that the other person might be anxious too.

Dr Elliott said that the app was created by an Irish epilepsy patient for an Irish epilepsy patient, and tested it with a wide cohort of people in mind.

The sample group had an even number of men and women, and was grounded in theory. It had an even balance between men and women, those of university age, those who were middle-aged and older groups aged 60 and over. It also covered the variables associated with those in relationship and those that weren’t, and those who were employed and those that weren’t.

“It’s a valuable piece of information that isn’t out there already.”

Read: Epilepsy drug which has left 400 Irish children with disabilities to come under EU review today

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