Purple Day : 26th March 2023
News
Purple Day, taking place on Sunday 26th March is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide, developed in 2008 by Cassidy Megan who lives with epilepsy. This Purple Day, the focus is on all the different ways that it impacts people affected by it - including those in a caring role.
Around one in a hundred people in the UK are living with epilepsy, with 87 new people diagnosed every day (Epilepsy Action) and it affects everyone in different ways. Some people will require a high level of care, most of which will be provided by family and friends.
Claire Bishop is mother to five children, aged between 7 and 16, two of whom live with epilepsy. One in every 220 children under 18 years of age has epilepsy, impacting parents, siblings and other family members, and changing family life. Claire explains the challenges of meeting everyones' needs, as in any family, where three children have health difficulties (one of her other children has a genetic condition called neurofibromatosis).
Aged 13 and 7 respectively, her two children with epilepsy experience their seizures quite differently, and need her constant awareness. Both can experience prolonged seizures of around 30 minutes, which can cause respiratory failure and / or cardiac arrest and usually result in hospitalisation, but daily absent seizures, focal seizures and drop seizures are all common in their family too.
'The hardest thing is the unknown - you don't know when the next seizure is coming, how bad it will be, whether they'll still be ok, still be themselves when they come round. It affects everything.
Claire describes the impact on family life, too, not just around seizures-management but the wider implications of epilepsy.
'It can make them quite tired, seizing, and they have seizures at night which affects their sleep. It can make them quite emotional too, they often need a lot more reassurance and emotional support than the other children. The medication can impact their mood and behaviour too.
It does affect what they can do - what everyone can do, really, in the family - where we can go, what we can do. The things that other families just do, we have to really assess and plan for.'
Claire is the main parent and carer for her children, but has a supportive husband and family members too, who she is very grateful for. She explains how she rarely discusses the difficulties of being in a caring role with others, aware that everyone has difficulties they are managing in their lives and not wanting to place pressure on others.
Claire is clearly proud of all of her children and wants to give each of them the love and support they need. Whatever the worries or stresses at the time, she wants to make sure her children aren't aware of how difficult it can be.
'They [the children] can't know the stresses, the worries - we take the impact. They have to feel safe, that everything's ok.'
Ways to support:
1. Wear purple. If anyone asks, you can explain why! Neurology Academy are wearing purple this Friday to show our support - and many of us will do so on Sunday too.
2. When in a clinic or appointment for a person with epilepsy, ask the person with them how they are - they are probably in a caring role, and might need some support.
3. Have some signpostable support on hand, perhaps a local group, the voluntary sector, carers organisation, respite facility, or talking service.
4. Do you know someone with a family member living with epilepsy? Can you offer some support, emotionally or practically?
5. Support Purple Day this year online via the 'Purple Day Twibbon', downloadable for social media pages online.
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Purple Day!
Living with epilepsy - Worries and wishes
Optimised education, compassionate care
Epilepsy Academy seeks to raise awareness of epilepsy, equipping professionals to deliver compassionate, holistic care that transforms people's lives.