Sophie's room is lavender, and I actually love the color purple, and we've been living epilepsy awareness every single day, so I didn't commemorate the day until this afternoon when I saw all the purple of my comrades and friends splayed out all over Facebook. My neighbor was wearing a purple tee-shirt and reminded me as well.
So much pain, so much frustration, so much anger and tenacity and strength and courage displayed.
So much love.
Here's a refresher:
- Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition, or may be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer's, and traumatic brain injury.
- You CAN die from epilepsy. While death in epilepsy doesn't happen frequently, epilepsy is a very serious condition and individuals do die from seizures. The most common cause of death is Sudden Unexpected Death in Epilepsy. While there is a lot we still don’t know about SUDEP, experts estimate that one out of every 1000 people with epilepsy die from SUDEP each year. People can also die from prolonged seizures (status epilepticus). About 22,000 to 42,000 deaths in the US each year occur from these seizure emergencies.
- Over 30% of those who have epilepsy suffer from refractory seizures -- epilepsy that does not respond to medication. All medications cause undesirable side effects, including irreversible ones.
- Despite those statistics, epilepsy is alarmingly under-funded and understood. Despite causing as many deaths as breast cancer, for instance, the NIH reported that in 2014, the support level for epilepsy based on grants, contracts, and other funding mechanisms used across the National Institutes of Health (NIH) was $154 million. The amount for breast cancer was $682 million.
- Epilepsy can devastate families financially as well as emotionally.
- DO NOT PUT ANYTHING IN A PERSON'S MOUTH WHILE HAVING A SEIZURE. It's impossible to "swallow the tongue."