Aug 4, 20234 min read

Friends & Family Family=Meet Lorrie

The Epilepsy Online Community Is Growing

Since I have began my blog, I have met many individuals which have epilepsy, advocate for others and or provide outlets to manage epilepsy.Yes, there are some bad things that occur online and as epilepsy advocates and living with epilepsy we try our best to help others not come in contact with those individuals for their safety.

I was fortunate to meet Lorrie Forseth via twitter and my blog. She is a wonderful epilepsy advocate from Vancouver, British Columbia as well as a mom of 2 and an avid sports fan(Baseball & Hockey) who has her own blog. All things we have in common. The difference is she is the caregiver better known as my husband would say the loved one of someone living with epilepsy. Due to this I wanted to learn more about her and living on that side of epilepsy in their family. I hope you enjoy what she has to say, as much as I do.

Describe how you got involved with Epilepsy Awareness.

My daughter was first diagnosed at age 8 after having 2 seizures . Before that , I had never heard of seizures or Epilepsy.

How did you begin to spread Epilepsy Awareness and why did you choose to?

In 2009 I saw a Facebook post about a young lady named Cassidy Megan who had founded purple Day (a grassroots effort to raise awareness.) I talked to my daughter’s and we decided to get involved and become Ambassadors. I chose to get involved because I felt alone when my daughter was diagnosed and I wanted to help through

sharing my caregiver story, that maybe others wouldn’t feel alone, like I did .

Tell me a little more about yourself

I am a post secondary ece grad, mom of 2 daughter’s. Volunteer, Ambassador, advocate.

How can people contact you if they wish?

https://www.twitter.com/LorrieForseth

https://www.instagram.com/LorrieForset

Tiktok.com LorrieForseth

LinkedIn – LorrieForseth

https://www.youtube.com/Lorrieforseth5282

Email – eviltoothfairy2@gmail.com

https://www.wegohealth.com/LorrieF

Why and when did you begin your blog and what has it done for you?

I made my first blog website in 2019, and named it epilepsyjourney , then in 2021 I decided to make a whole new blog site and name it https://morethanseizures.webnode.com

As I wanted a place that was mine , where I could share my thoughts , my personal journey and talk about more than just epilepsy and seizures, to hopefully reach a wider viewing audience.

In 2021 I was emailed by the producer of cbc radio Vancouver, as they were looking for someone who actually lives with and deals with Photosensitive Epilepsy, my name and blog came up when they had done a google search , as did my wegohealth profile .

The producer reached out to me and asked if my daughter and I would be interested in coming on their radio show to discuss “ Living with photosensitive epilepsy.”

We agreed, here is the radio interview link https://www.cbc.ca/live-radio/1-46-on-the-coast/clip/15943183-living-photosensitive-epilepsy

Any interviews my daughter or I have done, we share with my daughter neurologist and she uses them as educational tools.

Has it helped others who have reached out to you?

I’ve heard from some people , that speaking about photosensitive epilepsy has helped them realize the risk of flashing images/gifs on social media can be harmful depending on the sensitivity level of the person with seizures , and also the intensity of the flashing . Each person is affected differently and , not everyone who experiences seizures are Photosensitive

On Dec . 23 , people are asked to set their holiday lights to still mode, so people who may be photosensitiv can enjoy a bit of the Holiday without having to worry about possible seizure trigger from the flashing.

This was started by a grandmother in Australia: https://www.kidspot.com.au/parenting/switch-your-christmas-lights-to-still-mode-on-23-december/news-story/8fd8ac971d5399c74175741613fccf2f

I think if my story or journey reaches even one person leaving a positive impact I’m on the right track.

Thank you Lorrie for sharing your personal journey and continued advocating for those of us living with epilepsy. I can feel the love you have for your daughter in your words.

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