Anna’s story

Published: March 22 2024
Last updated: March 22 2024

“Epilepsy doesn’t mean your life is over, and you don’t need to be covered in cotton wool.” – Anna

Anna Shaw, 40, and her daughter Ruby, 8, , will be walking three laps around Avery Hill Park in Greenwich to mark Purple Day (26 March), the global awareness day for epilepsy. Also putting in the miles in support of people with epilepsy will be Anna’s Romanian rescue dog, Molly.

Anna lives with epilepsy and was diagnosed with the condition when she was 13 years old. She experiences seizure activity on a daily basis which is ‘incredibly frustrating’ for her. She explains:

“I’ve had many struggles over the years as I unfortunately have drug resistant epilepsy and it’s extremely uncontrolled. We have tried pretty much every drug and every combination and unfortunately, I’m not a candidate for brain surgery or a VNS, which is a device some people with epilepsy have fitted to help reduce seizures.

“I suffer multiple myoclonic jerks and focal seizures daily. I also usually have a few tonic-clonic seizures a week which leave me feeling whacked. A few times, I’ve suffered from status epilepticus, which is when a seizure becomes a medical emergency. Each time has resulted in a drug-induced coma, untold injuries and stays in intensive care while my body recovers.”

Despite the many challenges that come with an epilepsy diagnosis, Anna recognises all she’s achieved.

"My biggest achievement is beating all odds – I live independently and became a mum."

“Epilepsy has never held me back and in the 30 years of having seizures, I’ve achieved all my dreams. I’ve become a mum three times over and I am a pet mum to more than 15 furry babies. I also have a well-established career and have always worked when I can. Fortunately, I’ve always been supported by wonderful bosses and now I volunteer in animal rescue and am a qualified canine health consultant,” Anna added.

“Purple Day for me is about making others aware of the support that those with invisible disabilities may need, especially as I find epilepsy is still a very taboo and overlooked condition,” Anna said.

“Purple Day is important not only to me, but my children too, as they also deal with the reality of living with a family member who has the condition. It’s also important to raise awareness about seizures – they come in all shapes and sizes and even recovery and first aid can differ from person to person.”

“Another thing I wish people knew about epilepsy is that the condition doesn’t mean your life is over and you don’t need to be covered in cotton wool. We can still work and live fulfilling lives, we just have to make some adjustments to meet our needs.”

“I’m aiming to walk 10k, which is around three laps of Avery Hill Park in Greenwich with my daughter Ruby and our Romanian rescue dog, Molly. I’ve set aside three days to complete the challenge as this gives me a few options if I’m unable to do the sponsored walk on the set day. My epilepsy is uncontrolled and so I learnt a long time ago that it’s all about planning ahead and having a plan B.”

You can donate to Anna’s fundraiser here.