Epilepsy and VEDS (vascular Ehlers-Danlos syndrome) advocate Jaime Simpson has built a supportive online community through Embracing ECHO. Sharing her experiences with chronic illness, motherhood, and her service dog Echo, Jaime brings awareness and empowerment to others navigating similar journeys. Read her full story below.
How did your journey lead to creating Embracing ECHO?
I’ve had epilepsy since I was around three months old but wasn’t officially diagnosed until 2019 after a car accident. That’s when my seizures developed into tonic-clonic seizures, and I got Echo - who’s now my seizure alert dog.
I train service dogs every day, which I love, though my content can be unpredictable since it often depends on my health. I live with several chronic illnesses and have two young children, so balance is everything. We use adaptive tools - Echo can press buttons, open the fridge for my medication, and grab things I need. My husband and caregivers are incredible. I couldn’t manage everything without them.
Learn more: Introduction to epilepsy service dogs
How did your experience with service dogs begin?
I grew up in the service dog community. When I was eight, an organization came to my library, and I begged to help. That’s where it all started. Later, I got certified, interned, and worked with service dogs as an adult.
I didn’t plan to have one myself until my epilepsy worsened. When I got Echo, he followed me everywhere - even tried to unload the dishwasher! He picked up tasks so quickly that now, if the dishwasher’s open, he still can’t resist helping. He truly loves his job, and I can’t imagine life without him.
Tell us about your epilepsy diagnosis and treatment journey?
My parents noticed symptoms when I was about three months old. I’d stare into space and wouldn’t respond to sound or touch, but doctors dismissed it as “selective hearing.” I had absence seizures for years until my car accident, when they progressed into focal and tonic-clonic seizures.
Finding the right medication took time - it was a lot of trial and error - but I’m finally on a combination that works for me. Having a care team that listens has made a huge difference.
Your biggest challenges and lessons through your journey
The hardest part is being believed. When you’re young, doctors sometimes think you can’t have that many health problems. Even after positive EEGs, I’ve had ER doctors hesitate to treat me. That’s frightening when you’re in status epilepticus and need immediate care.
Learn more about seizure first aid
Advocacy takes practice, and it’s not always possible to advocate for yourself - especially during seizures. That’s why caregivers and loved ones are so important. Having someone who understands your condition and can speak up for you can be lifesaving.
What inspired you to share your story and build a community?
For a long time, I felt voiceless - especially before I had a diagnosis. It took years and genetic testing to get answers, and once I did, I wanted to help others feel heard too. I’ve always said I wouldn’t want a platform if it were only about me. Embracing ECHO is about community and connection.
Seeing the community that’s formed has been incredible. It makes me feel less alone. It’s heartbreaking that so many people live with epilepsy and chronic illness, but it’s also comforting to connect with people who truly understand. Every message I get reminds me that I’m not alone - and neither are they. We’re all getting through this together, one day at a time.
With everything you manage - how do you find balance?
You learn to live like a well-oiled machine - ready for anything. If I feel good, I get things done right away, because I never know how I’ll feel later. My caregivers and husband are amazing. They make it possible for me to be a mom and do everything I do. Some days are harder than others, but we take it one step at a time.
What’s next for Embracing ECHO - and what does the name mean to you?
We’ve talked about several things: advocating for better service dog accessibility, writing a book, maybe starting a podcast. With chronic illness, I can only take on one big project at a time, but I’m excited about what’s ahead.
I also recently attended the premiere of Under the Lights, a movie about epilepsy - it’s amazing to see that kind of representation.
Read Under the Lights director Miles’ story here.
As for the name, Embracing ECHO means embracing every day - and the dog who helps me live it. Echo was a turning point in my life. The name isn’t just about him - it’s about embracing life after epilepsy and everything that comes with it.
How can people best support your work and the epilepsy community?
Share your story. Support others living with epilepsy - not just me. Comment, connect, and raise awareness. And if you’re interested in service dogs or our community programs, visit embraceeveryday.org.
Share your story
If you’d like to share your story, contact our team at contact@epsyhealth.com.
