Epilepsy Action was a lifeline for Freema and her family when her niece Gabriella (real name protected) was diagnosed with epilepsy. Here the Dr Who and Sense8 star explains why she is supporting Purple Day and wants people to learn more about the condition.
- "I'd love to know where she goes!"
- "She's such a deep thinker!"
- "Penny for her thoughts!"
These are just some of the things people would say to us about my 7-year-old niece Gabriella. As a high-achieving, cheerful, enthusiastic young child, full of curiosity and wonder, people thought she was deep in a daydream. They smiled at her personality pauses, thinking them quirky or endearing. I did the same. I always thought she was just lost in thought but little did I know, she was just absent. Little did I know she was having absence seizures.
It wasn't until one day when an absence seizure turned into a tonic clonic one. She was dressed in a vampire costume, just to add to the surrealism of the moment. She vomited, became floppy and then rigid. Her eyes fluttered, her limbs shuddered, she wet herself and then passed out. There are no words to describe to you what we all felt at that moment.
There is no way I can convey the fear, confusion, panic and agonising sadness. That day we realised something was wrong. That day our hearts broke and our lives changed.
I say ‘our' lives because when a family member, especially a child, is diagnosed with epilepsy, it affects the whole family. You have to be on high alert and keep a close on the person, in our case until her medication had started to take effect. It also takes a long time for the trauma of that moment to heal. You are constantly having to adjust and adapt to what has become your new normal.
Kids are resilient and brave and they adjust quickly. Gabriella is now taking Lamictal twice a day to stop her brain from having 'power naps'. She understands she has ‘staring moments' and will often ask us if she's just had one. She might feel she's lost a pocket of time, evident from a conversation jump or a programme skip. But she has settled into her new normal just fine and is still the same wonderful, happy and intelligent child she always was.
It's the rest of us who find ourselves on a constant mission of information-seeking and reassurance to help us adjust. We couldn't have done it without Epilepsy Action.
Epilepsy Action has helped us immensely and has done so, essentially, by educating us. The internet can be a scary place with its endless and not- always-relevant information. When we needed a filtered voice to steer us to the answers, Epilepsy Action was there. The information and advice provided gave us the reassurance we needed. Epilepsy is a manageable condition. Thanks to their help, we have learnt that epilepsy is a manageable condition. Lives adjust but do not profoundly change or stop. It is so important that parents, families and schools can get access to the best resources. We have found that the more we talk to people, the more we learn and understand and meet others who are going through the same thing, the more we heal.
Raising awareness about epilepsy is important to me because until someone you know has the condition, it's not something many people know a great deal about. Epilepsy has many forms. It has been depicted in art for centuries, from votive tablets from the 17th century to modern day films and TV. We assume we understand what it involves. However, the way it is portrayed needs to be explored. In popular culture, too often fainting is portrayed as merely a silly swoon or unresponsiveness treated with a comedic slap and a sharp 'snap out of it!' It's interesting to me how we all thought Gabriella was a daydreamer because she's a bright child. If she was having 'staring moments' and underachieving, perhaps the label would have been 'lacks concentration'.
Epilepsy awareness is so important, and having an organisation normalise it and help you navigate it, with their expertise and experience, is vital. This is why I support Epilepsy Action.
With our help they can continue in their much-needed support and guidance of others.
Please join me today - together we can make a massive difference.