Living with epilepsy and having a family

 

Recently Stacey and her partner Ryan had their second child, a happy healthy little boy. They were eager to share their experiences to help other people with epilepsy who are thinking of starting a family.

Stacey was 16 years old when she was first diagnosed with epilepsy.

She has been living with the condition for 14 years and has full tonic-clonic seizures, which can cause her to blackout.

Despite being diagnosed at a young age, Stacey hasn’t let epilepsy stop her.

Recently Stacey and her partner Ryan had a second child, a baby boy and were eager to share their experiences to help other people with epilepsy who are thinking of starting a family.

Ryan said: “Stacey will blackout and usually goes limp when she has a seizure.

“Her pupils will go fully dilated and she will have a distant stare. The recovery process can take a minute, other times it can be six minutes.

“There have been times where she has stopped breathing altogether. She goes blue in the face and you have to clear her airway, so she comes around again.

“Every time she has a seizure, maybe two or three days later, she will have forgotten stuff from the past.

“It is like it is eating away at her brain every time she has a seizure.

“Memories from her holidays from a few years ago, she won’t remember that.

“However, she will remember something from ten years ago.

“It is weird but it’s harder for her because she will look at a photo sometimes and can’t remember any of it.

“It makes her really upset. It’s upsetting for me and our daughter Stephanie to look back at a photo and Stacey can’t remember being there or remember what happened that day.” epilepsy and family

 

Don’t let epilepsy stop you

Just a few weeks ago Stacey gave birth to a happy healthy boy and 12 years ago Stacey gave birth to their daughter Stephanie.

Both were determined not to let Stacey’s epilepsy get in the way of them starting a family.

Ryan said: “During Stacey’s first pregnancy she went the full term without seizures. It was five weeks after Stephanie was born when she had a seizure, which was put down to sleep deprivation.

“When the wee man arrived, it was a good pregnancy.”

Stacey added: “There were more support visits. Neurologists, medication and nurses. There was more available than there was 12 years ago.

“If you have got the support there from family, there is nothing stopping you.”

The couple would encourage anyone who has epilepsy and is thinking of starting a family to not let the condition stop you.”

 

Having the right support

Ryan said: “I would say go for it. As long as you have the right type of support by your side, whether that is family, friends or somebody else, there is always light at the end of the tunnel.

“I wouldn’t let epilepsy put you off. Stacey is living proof of it. She has come a long way.

“You can have a normal family successfully. There are times that are going to be hard and emotions are going to be high. But there is nothing really stopping people.

“It was worth that bundle of joy at the end of it.”

Stacey added: “Don’t let epilepsy take over what you want to do with your life.

“We taught our daughter Stephanie from an early age what to do if I have a seizure.

“She has known what to do since nursery. We started off with basics like phoning 999 or to get her Dad.

“She knows the procedure. She doesn’t let that define her, but she just knows what to do.”

Ryan continued: “I know a lot of people would be put off because they are thinking that ten years down the line my child is going to have to look after me.

“Our daughter Stephanie is living proof that this is not the case.

“She is out enjoying herself every day. It is something that is there, but it is in the background.

“When Stacey has a seizure and I am not around she knows what to do.”

For more information on epilepsy and starting a family, please check out our Women and epilepsy factsheet or email contact@epilepsyscotland.org.uk.

 

 

 

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