More common than multiple sclerosis, cerebral palsy, and Parkinson’s disease combined, epilepsy is far more prevalent than people may realize. Affecting 3.4 million people nationwide, nearly 60,000 of those people reside in Colorado, making up 5% of the state’s population. This neurological condition affects both males and females of all ages, races, and ethnicities. 1 in 26 people will have epilepsy in their lifetime.
Epilepsy creates abnormal brain activity, a misfire, resulting in uncontrollable seizures or episodes of unusual behavior, loss of awareness, and sometimes loss of consciousness. As a spectrum condition, seizure types and severity vary from person to person.
“It’s one of those conditions that still has a lot of stigma around it. There’s a lot of misunderstanding, a lot of misperceptions, people think it’s very scary,” says Sarah Klein, Director of the Epilepsy Foundation of Colorado. “Most people think of a seizure as someone falling down and convulsing on the floor; it’s very dramatic. Most seizures are not visible like that. Sometimes, it’s 5-10 seconds of what looks like zoning out. Other people get up and wander around, or their arm twitches. It’s a seizure, but you would never know it.”
For about 2/3 of people, a traditional pharmaceutical treatment will work to control seizures. For the other third, 20,000 people in Colorado don’t see improved results with their prescribed medication. The Epilepsy Foundation of Colorado is determined to open avenues for people to get what they need.
“The cannabis products are, for a lot of people, an effective therapy. We’re supportive of anything that people need to make their lives better. It is CBD, specifically, that people are using for seizure management. There seems to be a pretty profound effect on the brain. It definitely makes a really big difference. Some people take it preventatively as a regimen and others take it reactively to diminish or stop the effects of a seizure.”
The only office across the Rocky Mountain region, the Epilepsy Foundation covers Colorado and some of Wyoming and New Mexico. They offer one-on-one assistance with a mental health therapist on staff, financial aid, various social support groups, and an entire education sector including a youth development program for high school kids that raise awareness about epilepsy in their communities. “Epilepsy 101,” a seizure first aid training, travels to schools, workplaces, and to first responders in fire, police, and EMT services.
Sarah lights up the most sharing about their summer camp, where for many kids, it’s the first time they’ve been able to be away from home due to their medical needs. There are two different camps for two age groups of kids that are fully staffed 24/7 with doctors and nurses.
The summer camp gives a week of “Yes!” to kids who have heard “No” so often because of their challenges. For a lot of them, it’s the first time they’ve met another person with epilepsy and are part of a group that understands them. “They get to ride horses, go on the ropes course, they can do whatever they want,” describes Sarah. “Kids just getting to be kids is just the greatest thing. It really is.”
The foundation also does a lot of advocacy. Last year, they got a bill passed that enabled a certain drug to be available to the epilepsy community. Right now, they’re supporting a bill that will allow cannabis delivery to people’s homes.
All these services and programs are provided by a team of seven people who work hard. The small team allows the freedom and flexibility to see and address issues quickly, being responsive to the community and its needs.
“Colorado is definitely the forerunner in terms of legalization, but also, the whole attitude of the community is supportive and positive. We’re really lucky that there’s so much access and opportunity here. We’re trying to make people feel comfortable, erase the stigma, educate, and do as much as we can.”
Learn more about the Epilepsy Foundation of Colorado here.
*These statements have not been evaluated by the FDA and this content is not intended to be used to diagnose, treat, cure or prevent any disease.
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