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Nose for News by Sarah Stultz

Another November has rolled around, and for our family this month is a time that we can bring attention to the challenges that our family and many others face because of epilepsy.

According to the Epilepsy Foundation, one in 10 people will have a seizure in their lifetime, and one in 26 will develop epilepsy during their lifetime. There are more than 60,000 people in Minnesota and eastern North Dakota alone living with epilepsy.

My son had his first seizure when he was 7 days old, and it has been a whirlwind ever since during his more than nine years of life.

As a parent of a child with epilepsy, it’s like living in a constant roller coaster state — just when you think you’re coasting along, something happens out of the blue and it feels like you’re plummeting down a steep drop or you get thrown for a loop and your stomach churns.

Having a child with epilepsy keeps you on your toes. We’ve learned what things to watch out for that sometimes trigger Landon’s seizures, how to respond if he does have a seizure and how to advocate for our son in various settings.

We never imagined before he was born that we would be on this journey — that we would have to carry an emergency medication around 24/7 in case of a longer seizure, that we would be teaching others about seizure first aid and that we would have to fear calls from his school, knowing that it could be someone calling to let us know he has just had a seizure.

We’ve learned more about hospitals, emergency rooms and health insurance than I would have cared to know and spent thousands of dollars in medical bills and prescriptions — much more than anyone should have to pay.

Though this is one of our family’s life challenges that we have to live with the best we can, we know it’s also an opportunity to educate, lobby for and help other families who face similar challenges.

I remember how horrified we were when our newborn baby had his first seizures — and how horrifying it still can be at times even now with nine years of experience with this disorder.

If there’s anyone out in the community who is experiencing something similar for the first time or who simply needs someone to talk to, please reach out. I would be happy to offer a listening ear of support.

Though much has been accomplished in the medical world related to epilepsy, there is still much work to be done.

According to the Epilepsy Foundation, the disorder receives 10 times less funding than other brain disorders. How can we increase the amount of funding for research and overall awareness of this disorder?

Though I recognize not everyone can give toward epilepsy research, I hope that you will at least consider educating about seizure first aid. With statistics showing that one in 10 people will experience a seizure in their lifetime, the chances are high you will come across someone or know someone who has a seizure.

Knowing the proper way to respond if you see someone having a seizure can protect them from injury or possibly worse.

 

Sarah Stultz is the managing editor of the Tribune. Her column appears every Wednesday.