Elizabeth Stout, Kalamazoo senior, began her relationship with the Family Center for Children’s of Special Health Care Services when one of her friends from high school’s mom reached out to her to be a youth consultant on the pediatric epilepsy project in July of 2018. Stout was approached because she is a young person who has lived with epilepsy for twelve years now.
Going into her first year at Albion, Stout had just started her new position and immediately began attending meetings for the Children and Youth Epilepsy Project. Stout is a member of the Pediatric Epilepsy Project Advisory Team, Bullying Prevention Initiative Committee and Transition Resource Project. As a part of her position, she creates resources for disease management and provides feedback for the website and courses with her experience.
“It’s provided me with a lot of opportunities to do things, both directly through the project itself and branching out as well,” said Stout.
Stout has presented at many conferences over the years including the Adolescent Health Initiative Conference, Adolescent Telehealth Care Extension for Community Outcomes, multiple times at Michigan Pediatric Epilepsy Project Quality Improvement Network Conference and numerous others.
During her internship at Epilepsy Foundation of Michigan, starting in May 2021, Stout was able to create social media content and information sheets to promote events. Additionally, she helped plan a six-week E-SMART virtual conference to help teens living with epilepsy to understand their disease and presented at a Discovery Camp about her experiences with epilepsy.
“One of the big things that this job helped me with is getting involved with the American Academy of Pediatrics and I now have been involved in a couple of positions within that,” said Stout.
Going into college, Stout planned on entering a healthcare related career path, but did not realize until after attending the Association of Maternal and Child Healthcare Programs conference in March 2019 that she could combine her interest for educating others.
“Seeing everyone come to support children’s healthcare programs was exciting,” said Stout. “It showed me how I could use my interests in healthcare as a general field and also implement my love of education and helping people and even things like writing. It was the idea that there’s so many ways within public health to integrate different interests.”
Stout uses her experiences to help others on the committee that don’t experience epilepsy and haven’t been through the healthcare system to shape the language they use in their documents.
“As much as they are trying to work in the best interest of the patients there are going to be things from their perspective that just aren’t going to be understood,” said Stout. “It’s always going to be different for those that actually went through it themselves versus just reading about it and hearing it. Like when we are going to submit something, generally beforehand, everyone has me look over stuff to give feedback and comments.”
One of the missions of Stout’s many projects is to bring awareness to the fact that not everyone responds to their epilepsy in the same way. Instead, she would like people to know there are many different kinds of seizures and the type of seizure that most people are familiar with is the tonic-clonic seizure.
“It’s important to know that everyone has different ways that their epilepsy presents,” said Stout. “For example, when I have seizures I just would not be able to talk, but unless you actually asked me a question people would not be able to notice. But at the same time if that were to happen in the middle of an exam I would certainly not be able to finish it.”
Children’s of Special Health Care Services, with the assistance of Stout as a youth consultant, is currently working on legislation that will require employees in the education field to get mandatory epilepsy training.
“We don’t want people to have such strong assumptions about what qualifies as a seizure and how to respond to it,” said Stout.
Currently, parents are the ones that are handed the task of educating teachers about their seizures in Michigan. Unlike many other students with epilepsy, Stout had parents in the healthcare field that were able to educate her teachers every year when school started.
“I think the main goal is to provide a system to assist educators in understanding epilepsy and how to respond to students that have it,” said Stout. “To make their time as a student with epilepsy easier. To not be a difficult thing to live with.”
As Stout is applying for graduate school, she plans to continue her work with the Family Center of Specialized Health Care Services.
“The biggest thing that all of this has taught me is that situations that are challenging can still have ways that you can find positives in them,” said Stout. “Because if it had not been for my epilepsy I would have never gotten started on any of this and I know I would be a very different person.”
Students that are interested in supporting the many projects done through the Children’s of Special Health Care Services can find information on their website. Students can also volunteer through the Epilepsy Foundation or other organizations that help those living with epilepsy.