Steamboat man aims to raise epilepsy awareness on Purple Day
March 18, 2018
STEAMBOAT SPRINGS — Steamboat Springs resident Bill Whittemore has lived with epilepsy his entire life, and that's a big reason why he’s been hanging flyers around town and doing whatever he can to encourage people to recognize Purple Day on March 26 as a way to raise awareness of the disease that impacts more than 3 million people in the U.S.
Whittemore was inspired to get involved after hearing the story of Cassidy Megan, who started Purple Day in 2008 at the age of 12. She went to her parents with the idea of creating a day that would get people taking about epilepsy in an effort to dispel myths and let those who are dealing with epilepsy know they are not alone. Her message reached people like Whittemore.
"I've had it my whole entire life," Whittemore said of epilepsy. "I was born normal, and then when I was two days old — and back in those days still in the hospital — I stopped breathing. A nurse noticed that and rushed me to the emergency room. But before I was able to start breathing again, epilepsy formed in the speech area of my brain."
Because of epilepsy, it takes Whittemore a little longer than other people to express himself, but those who listen realize he has plenty to say. He will tell you what it was like to grown up with epilepsy and how other children would make fun of him as he struggled to get his words out. He also had to deal with seizures on a weekly basis and was seriously injured a few years ago after having a seizure while riding his bike downtown.
"All through my school years, I was put down so much because of my epilepsy and also, because of my speech," Whittemore said.
This week, however, he is using his voice and his passion to encourage others to learn about epilepsy as part of Purple Day by visiting purpleday.org to find out more about the brain disorder, and to hopefully, make donations to support research and advances in treatments for a condition that affects one in 100 people in the U.S.
Recommended Stories For You
Whittemore said there is no way to stop a seizure once it starts, and those who witness a seizure should take steps to prevent the person from injuring themselves. Most seizures pass quickly, but it's never a bad idea to call an ambulance, Whittemore said.
"Seizures can manifest in so many different ways, and not all of them are of the big arm- and leg-shaking variety that people might think of,” said Dr. Scott Strader, who is a neurologist with the UCHealth Neurology Clinic in Fort Collins. “Some can be much more subtle than that, and people can also have multiple different seizure types."
In Whittemore's case, he has had seizures two to three times a week for most of his life. He took medication to prevent the seizures, but Whittemore said that didn't always stop them. More recently, he has changed his diet, stays away from gluten and has found great success. He has not had a seizure in 75 days.
"I personally find that organic foods help my health," Whittemore said. "But no two epileptics cases can be treated in the same way."
Strader said 10 percent of the world’s population will have a seizure at some point in their lives, but this does not mean they have epilepsy. But of that 10 percent, 1 percent are eventually diagnosed with epilepsy.
By definition, people with epilepsy must have more than one seizure, but the frequency and severity of those seizures is as varied as the type of people who have them, Strader said. In some cases, the condition goes away and never comes back, and in other cases, people may have multiple seizures each day.
"So, that's a pretty high percentage of the population that has this," Strader said. "In some people, it is very easily controlled, and it does not impact their life at all, and in other people, it's very difficult to control, and it has a major impact on their life."
Patients now have access to more medications than ever before to help control seizures. Some people are candidates for brain surgery, which can treat seizures, and others are fitted with an implanted device called a vagal nerve stimulator that can help control seizures. Strader said diet can also help people control seizures.
Whittemore would love to see a cure, but right now, he’s focused on raising awareness about the disorder and how it affects those people dealing with it. And ultimately, that's what Purple Day is all about.