Purple Day is all about people with epilepsy coming together to raise their voices and speak out. Listen to Derrick, Debbie, Murray, Bob, Phil, Lauren and Charlotte as they tell us about their epilepsy, the myths they would love to bust and what they want the world to know about the condition.

What do you want to tell the world about epilepsy? - Purple Day bonuscast

“Ultimately, you have to find the light in it rather than the dark.”

Epilepsy is hugely varied and affects everyone differently. For Purple Day 2021, we are excited to be able to share comedian Maisie Adam’s epilepsy story in this special bonus episode of epilepsycast. Diagnosed with epilepsy at 14, Maisie talks about her experiences coming of age with epilepsy and sharing it as part of her comedy routines. In this insightful chat, she reveals how humour helps her deal with the realities of her condition, and how she handles misconceptions that others have. She also shares insights into her comedy career and how she’s found doing stand-up in the global pandemic.

You can watch ‘Vague’, Maisie’s standup show about her epilepsy, here - https://www.amazon.co.uk/Maisie-Adam-Vague-NextUp/dp/B07XZHK914

Transcript link: https://otter.ai/u/TMcCcQzuH0sEVr13guCT7pQclGI?f=

Talking epilepsy and comedy with Maisie Adam - Purple Day bonuscast

This bonuscast celebrates International Epilepsy Month with an in-depth conversation with model Ariish Wol.

Born in South Sudan, Ariish moved to Canada as a young child. She was diagnosed with epilepsy at 14. Her modelling career started with Vogue Italia and she not looked back since, most recently fronting campaigns for H&M and appearing at Paris Fashion Week. She talks about how she balances her wellbeing with the intense pace of modelling work, her dreams and discoveries. Ariish reflects on her upbringing, her epilepsy diagnosis and the traumatic events that shaped her. She also explains her huge struggle to cope as a young mother when hospitalised by seizures.

The conversation covers some sensitive issues that may be upsetting to some listeners, including child sexual abuse and Ariish’s decision to put her child up for adoption. You can find Ariish on her Instagram @ ariish_wol

MIND offers support to adult survivors of child sex abuse: https://www.mind.org.uk/information-support/guides-to-support-and-services/abuse/#SexualAbuseSupportForAdults

Support is available to help parents with epilepsy. To find out more about caring for a baby or young child when you have epilepsy, visit https://www.epilepsy.org.uk/info/caring-children or contact the Epilepsy Action Helpline on freephone 0808 800 50 50.

In conversation with model Ariish Wol

Port Vale captain, Leon Legge, was diagnosed with epilepsy when he was 16. He's on a mission to tell as many people about epilepsy as possible. He chats about how his football clubs have reacted to his epilepsy and shares his thoughts on the TikTok seizure challenge and how he's keeping fit in the coronavirus lockdown.

epilepsycast episode 1 - Leon Legge

Living in lockdown is hard and it can be even harder if you are affected by epilepsy. We want to remind people this National Epilepsy Week - and beyond - that you are not alone. Listen to voice messages from people with epilepsy and parents of children with epilepsy as they share their lockdown stories, top tips on coping and supportive words of encouragement.

Bonuscast - Living in lockdown with epilepsy

Rachel Batchelor, 22, has had epilepsy since she was 15. She chats about managing epilepsy as a student, taking six years to get diagnosed and working on The Epilepsy Space - Epilepsy Action’s new interactive resource for young people. As someone who has less commonly understood seizures, Rachel talks about feeling like a “walking education” to those around her.

Episode 2: Educating by existing - life with focal seizures

Bob Sutcliffe was 36 when he had his first seizure. We talk to Bob about how his attitude to his epilepsy has changed over time, the unique way he has found to look after his wellbeing, and his motto “never give up.” Bob’s paintings have raised over £100,000 for charities, including Epilepsy Action.

 

All over the world, people are speaking up for the rights of black people following George Floyd’s death. Youtuber Derrick Kay, who has epilepsy, shares his story about an awful experience he had a few years ago following an interaction with the police. See more from Derrick and hear what he thinks needs to change, by watching his video on our social media channels.

ep 3 - Floor dancing and painting with epilepsy

Michael and Paul Atwal-Brice have 2 sets of identical twin boys. Levi and Lucas, 14, have severe epilepsy and non-verbal autism. We chat to them about the rollercoaster of life, their busy household and attitudes towards epilepsy.

Show notes:
1)	We run through this week’s epilepsy news:

•	Listening to Mozart can reduce seizures in people with epilepsy: https://www.telegraph.co.uk/news/2020/06/16/listening-mozart-can-reduce-seizures-people-epilepsy/ 

•	An amazing six-year-old girl who looked after her mum when she had a seizure: https://www.dailymail.co.uk/femail/article-8444293/Daughter-six-saved-epileptic-mothers-life-started-fitting-calling-family-members.html

•	DevonLive epilepsy story https://www.devonlive.com/news/devon-news/devon-epileptics-speak-forgetting-wedding-4229799 

2)	Nominate someone in your life that has made a difference to people with epilepsy during the last 12 months for an Epilepsy Action 2020 award – www.epilepsy.org.uk/awards

3) Michael and Paul Atwal-Brice adopted twin boys Levi and Lucas at the age of two. As the first weeks and months went on, they learnt their boys had severe autism, global developmental delay, severe learning disabilities and behavioural problems. When both boys developed epilepsy a year later, their world turned upside down. What followed was constant medical appointments, learning about how epilepsy would affect their family and the daily fear that the worst might happen.

Through tireless campaigns for access to treatment for the boys and a passion to show that disabled people are not second-class citizens, the Atwal-Brice family have proven themselves a force to be reckoned with. We chat to Michael and Paul about their struggles, what daily life is like, their campaigning efforts and how everything they do is done out of love and joy for their family. 

Watch Paul and Michael’s Father’s Day video here: https://www.youtube.com/watch?v=4avb9FeN-po
Paul’s #dancingdaddy video: https://twitter.com/AtwalBrice/status/1102477657260867584?s=20

ep.4 - The people we're most proud of are the children we parent

After being diagnosed with epilepsy in 2015, Fran walked 500 miles of the Camino de Santiago in Spain two years later, solo. In 2019, she completed the 100KM Race to the Stones ultramarathon. We talk to Fran about adventuring with an epilepsy diagnosis, judging risk and how she doesn’t like the word ‘inspiration’. We also chat with Daniel Jennings, Epilepsy Action’s Senior Policy and Campaigns Officer about sodium valproate and the Cumberledge Review.

ep 5 - Seize your adventure

Patience was diagnosed with epilepsy when she was 14. She has both tonic-clonic and focal seizures, sometimes two or three a week. Patience chats with us about her epilepsy journey. How her sister reacted to her first seizure, how shocked her friends and family were, her struggles with work and an invisible condition and her incredible decision to move her life to a different city. Throughout, Patience maintains her philosophy: ‘Keep in control’.
Check out Patience’s new YouTube channel ‘Complete Patience’: https://www.youtube.com/channel/UC49RazyRNhh8S2-Y7BhPtmw

This week’s epilepsy news:
•	With face coverings in shops becoming mandatory on 24th July, we share advice received from Dr Rhys Thomas about how safe they are for people with epilepsy.  (https://www.epilepsy.org.uk/info/daily-life/safety/coronavirus-covid-19)
•	The International Bureau for Epilepsy is looking to gather stories of people’s experience with COVID-19 and lockdown. Please email us on podcast@epilepsy.org.uk to share any stories.
•	Epilepsy Action has launched its gaming for good fundraising programme. Set yourself some gaming challenges, stream on your platform of choice and get your viewers involved in donating and learning about epilepsy. Learn more at epilepsy.org.uk/gaming

ep 6 - A marathon, not a sprint

Ibby had baby daughter Niamh just under four weeks ago. She had seizures all through pregnancy, including just before the epidural for her C-section. We talk to her about being new to epilepsy, the joy of having a baby and the challenges the two can bring together.

This week's epilepsy news:

- We talk through an article from The Sun about some shocking figures from the Office for National Statistics showing that Brits are more likely to have a degree than to have no qualifications at all - but those with epilepsy are the least likely to have a degree and the most likely to have no qualifications out of all disability types.

- Keele University researchers are looking for the opinions of people with epilepsy, carers, family, friends, people who receive alerts from wearable alarms and healthcare professionals. The aim is to explore how people use them, and what their opinions are about them.

ep 7 - epilepsy and having a baby

Ellis, 9, was diagnosed with focal epilepsy in 2019. His whole world was turned upside down, becoming withdrawn and depressed. His seizures still aren’t under control. Reggie, a good school friend of Ellis, has proven to be a hero when it comes to recognising Ellis’ seizures. Both in person and throughout lockdown, Reggie checks on Ellis to keep his spirits high. We talk to the two boys about epilepsy, friendship and what they’ve been up to recently. 
This week’s epilepsy news:

•	As season one of epilepsycast draws to a close, we look back over some of our favourite moments of the podcast so far.

•	We share a story from Joe who was diagnosed with epilepsy when he was 15, now 28 he still isn’t seizure free. We always want to hear powerful stories from people with epilepsy. You can write your own at epilepsy.org.uk/my-story

•	For more information and advice on face coverings, visit https://www.epilepsy.org.uk/info/daily-life/safety/coronavirus-covid-19 You can also buy Epilepsy Action face coverings and hygiene hooks by visiting here: https://store.epilepsy.org.uk/collections/merchandise

ep 8 - A winning tale of friendship

What’s changed with epilepsy in the last 70 years? In this special bonuscast, we talk with Epilepsy Action Chief Executive Philip Lee about the history of epilepsy, key milestones and changes for people with epilepsy, the challenges that 2020 has brought and what we hope for the future.

Bonuscast - What’s changed with epilepsy in the last 70 years?

We are Epilepsy Action

We care about people with epilepsy and their families. We listen to them, we respond to their needs, we reflect their ambitions and we understand their lives. We never forget that epilepsy is about people.

We represent by providing identity, unity and a voice for people with epilepsy, their families and anyone else with an interest in the condition.

We lead by being creative and innovative in our thinking and decisive in our actions. 

We inspire by being positive about epilepsy; by being courageous in what we do and confident in the way we do it.

We organise resources by raising money, encouraging and supporting volunteers and by working with others who share our goals. 

We work locally where people with epilepsy live and nationally across all countries of the United Kingdom.

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