National Epilepsy Week

National Epilepsy Week runs from 23-29 May 2022 and this year epilepsy charities in the UK are focusing on both the important role that families, friends, colleagues and healthcare professionals play in supporting people with epilepsy, and also on how the condition can impact them.

Many of the young people that Aergo Health has met on our company’s journey have a diagnosis of epilepsy and over the years, we have always been interested in their experiences and the impact that epilepsy has on their lives.

There are 600,000 people with epilepsy living in the UK, around one in every 100 people.

Every day, 87 people are diagnosed with epilepsy.

We have also learned that out of every 100 people with a learning disability, around 22 also have epilepsy.

While research shows that just 30% of people in the general population with epilepsy have seizures when taking medication, this jumps to 70% for those with a learning disability.

Our perceptions of what epilepsy ‘looks like’ has been challenged as we’ve heard about the difficulties of getting a diagnosis, the different types of seizures and the various medications and treatments used to control seizures.

We’ve heard about the side effects of some of these drugs, with parents explaining that sometimes these can be as bad as the seizures.

We’ve met young people who have been seizure free for many years but whose families live under a constant fear of renewed seizure activity, we also learned about uncontrolled epilepsy or drug resistant epilepsy.

Our team has met young people who follow a special diet called the Ketogenic Diet, a high fat, low carbohydrate diet to try to manage their seizures and the challenges this presents especially if the young person has swallowing or feeding issues.

Although each young person’s experience of epilepsy is very individual, a common thread amongst all the families we have met or been in contact with is the impact of epilepsy on the whole family.

It can control almost every element of family life, with each family leaving no stone unturned in research of treatments and medications to try to control their child’s epilepsy.

For more information about epilepsy visit: Epilepsy Action