epilepsycast Epilepsy Action

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.

“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 - www.amazon.co.uk/Maisie-Adam-Vagu…Up/dp/B07XZHK914
Transcript link: otter.ai/u/TMcCcQzuH0sEVr13guCT7pQclGI?f=

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’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.

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 epilepsy.org.uk/info/daily-life/safety/coronavirus-covid-19. You can also buy Epilepsy Action face coverings and hygiene hooks by visiting our shop.

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.