Loss of consciousness, violent convulsions, limitations on driving and other activities, these inconveniences and others are what come along with having epilepsy. Studies show that epilepsy is the fourth most common neurological disorder and 1 in 26 people will develop epilepsy at some point in their life. As we celebrate National Epilepsy Awareness Month, it is important for us to focus on how to support our friends and family who have epilepsy and eliminate the stigma associated with experiencing seizures.
United Way is proud to partner with the Epilepsy Foundation of Missouri and Kansas which focuses on overcoming the challenges of epilepsy, discovering better ways to treat it, and ultimately finding a cure. We spoke with Christy Polk, Interim Executive Director of the Epilepsy Foundation, about the difficulties that comes with living with epilepsy and their mission to end epilepsy.
How is the Epilepsy Foundation of Missouri and Kansas leading the charge in providing aid and support to our neighbors who are living with epilepsy?
We provide services primarily through three programs.
Our first program is education. We increased our training to school personnel significantly due to the passage of Will’s Law which requires seizure first aid training in the state of Missouri for all school personnel.
Secondly, we have our Information Referral Service in which we provide resources to anybody who may have epilepsy or may have a friend or family member who has epilepsy. We help these individuals find epileptologists and neurologists, get assistance with paying for medication, and more.
Lastly, there is our Independent Living Program that is provided to individuals over the age of 18 in St. Louis City and County where we provide direct services to help them manage their epilepsy and live safely in their current environment.
What are some of the most common triggers of seizures?
It depends on the individual. What we like to tell people with epilepsy is to try to live as healthy as they can and that consists of things like getting enough sleep, eating a healthy diet, and taking your medication consistently. Then there are other types of epilepsy that may have certain triggers such as flashing lights, contrasting lights or dark patterns, and in that case, that has to be more about managing your environment.
How can people support someone who may be actively experiencing a seizure around them?
Our three steps are Stay, Safe, and Side.
Stay with the person.
Safe – Make sure they are not around harmful items or in a harmful place.
Side – Turn the person on their side.
You should call 911 if:
- The seizure lasts for more than 5 minutes.
- Person does not return to their usual state.
- Person is injured, pregnant, or sick.
- Has repeated seizures.
- Has seizure for the first time.
- Has difficulty breathing.
- Seizure occurs in water.
When a lot of people think of seizures, they think of violent muscle convulsions and a subsequent loss of consciousness, but another aspect of living with epilepsy is experiencing absence seizures. Can you explain what those are and how they can affect people on a daily basis?
Absence seizures basically involve a brief lapse of awareness. These seizures can look different depending on the person with epilepsy, but that person may look like their daydreaming, or just starring. They also can have some symptoms that’ll involve chewing or blinking, and they usually last for very short periods of time, but they can occur many times during the day.
A lot of times people don’t recognize that those are seizures, and they may think that the person is just disinterested or not paying attention. Take for instance a student in school, maybe the teacher may think that the child is not paying attention, but they actually have epilepsy and they can’t help it.
How helpful has United Way’s funding and support been in helping you in your efforts to accelerate therapies to stop seizures?
We are extremely grateful for United Way’s funding. The funding really fills the gaps for all of our programs where I know if we did not receive that funding, we would be limited in how many people with epilepsy that we’re able to provide support, education and assistance to.
We are allocating some of these funds to finding a cure. There are steps that are moving in the right direction every day, and I am encouraged by the advances that continue to be made.
Take action now:
- Learn more about how United Way is improving health in the St. Louis community.
- Share this story with family and friends.