A photo of Rebekka on holiday, with a coastal scene behind her

We need to understand epilepsy better

One of our Scope For Change campaigners Rebekka Smiddy has photosensitive epilepsy. In this blog she tells us why more awareness of epilepsy and its effects is needed.  

As Purple Day arrives (Saturday 26 March), it’s a great time to highlight some of the main issues relating to epilepsy.

Epilepsy is perhaps one of the better known conditions; pretty much everyone knows of epilepsy or someone with epilepsy, and it affects 1 in 100 people.

However, public knowledge about the condition remains limited. For example, there are over 40 different seizures, such as absences (blank spells) and head shaking. Despite this, most people only accept the stereotypical convulsive seizure and believe flashing lights triggers most epileptics.

Only around 5 per cent are photosensitive, and there are a wide range of triggers including tiredness, stress, fear, certain smells and noises, illness, alcohol and drug use to name a few. It is important to realise that this is a highly individualised condition.

“It can be a dangerous condition”

It can also be a dangerous condition due to the unpredictable nature of seizures, with a high level of accidents and in serious cases death, due to Sudden Unexpected Death in Epilepsy Patients, although 39 per cent of epilepsy deaths could be avoided.

Most damaging are not the seizures, although they carry significant risk –  it is the isolation, impact on mental wellbeing and mishandling of treatment/seizures. The majority of epileptics can suffer from anxiety, depression and other mental health issues – much is due to social stigma and mishandling of the condition.

Two examples highlight such issues; the Marriage Act of 1949, which prevented epileptics from marrying was only repealed in 1970, and the fact that epileptics still cannot give blood, despite rigorous campaigning by epilepsy charities.

Understanding epilepsy

Epilepsy is a weird one; it falls into the realms of a ‘hidden’ impairment and a chronic condition with physical manifestations you can’t escape.

Societal attitudes continue to have a negative impact. It led me to believe that I wasn’t disabled and, therefore, didn’t have the right to ask for understanding and support.

More generally, it can lead epileptics into risk taking behaviour in an attempt to normalise their lives, and take back lost control.

There needs to be a greater understanding of the condition to ensure that the right treatment, care and support are provided.

Interventions need to be well timed to prevent mental health issues developing, with a greater recognition of the impact epilepsy has on the sufferers everyday life, both in psychologically and logistically.

Seizures need to be dealt with in a proactive manner. During tonic-clonic episodes I have been forcefully restrained, stepped over and ignored, sustained further unnecessary injuries and taken unwarranted trips to A&E – all of which could have been avoid with a little education.

The majority of the public mean well, but sometimes ignorance of the condition and its needs can be damaging and dangerous.

Understanding that epileptics have ‘non-traditional’ accessibility issues is crucial for inclusion. The disability requires a highly individualised approach; basically, we just need to be treated as a person.

Most epileptics are happy to talk through their own epilepsy and needs. This is preferable to making assumptions and helps dispel lingering stereotypical views, and hopefully will reduce prejudice and discrimination.

So on Epilepsy Awareness Day, yes, wear purple, but more importantly, discover more about the condition.

Find out more about epilepsy on the Scope website