I asked fellow parents of children with devastating forms of epilepsy this question:
What do you wish people knew about epilepsy?
Here’s what they had to say:
1. Epilepsy is deadly.
- Epilepsy can kill. Just one seizure can kill.
- People rarely realize someone can die from having a seizure or complications of seizures.
- SUDEP (sudden unexpected death of someone with epilepsy) is real. More than 1 in 1,000 people with epilepsy die from SUDEP each year, according to the Epilepsy Foundation. And for our kids who have uncontrollable seizures, the risk is higher.
2. Seizures are not what you think.
- I wish people would take all the “knowledge” they have from seeing seizures on TV and forget what TV “taught” them. Seizures do not always look like what you see in the media. Sometimes unless you know the person well, you may never even know they’re having a seizure.
- Just like everything in life there’s a wide variety of seizures and how they present themselves. These are six common types of seizures.
- I’ve heard people say it isn’t possibly to have hundreds of seizures a day — it is possible. With certain types of epilepsy you can have hundreds a day. Easily.
3. Epilepsy is not contagious.
- Epilepsy is a neurological disorder.
- You can be around people with epilepsy. You won’t catch it.
- It won’t wipe off on you; so you can give someone with epilepsy hugs and kisses.
- People with epilepsy love to be involved, even though some might not be able to run or participate in the same way as everyone else. Inclusion means so much.
- I wish other parents would teach their kids that while some types of seizures are scary, it doesn’t mean a child with epilepsy is scary.
4. There is no cure for epilepsy, and treatment can be difficult.
- I wish people realized what I didn’t when this started — that a magic drug to stop seizures doesn’t exist, and in some cases, no medication or combination of meds will ever work.
- Epilepsy often comes with other diagnoses.
- Our neurologist says neurology is more art than science and that’s helped me a lot… it helped me understand how not concrete this all is; it isn’t like math where 2+2 will always equal 4. It’s more like determining which painting is a masterpiece and which is crap (which is sort of a matter of opinion).
- If you’ve heard of “this new cure” then I have too… It isn’t that we aren’t open to trying new things, we are, we spend hours and hours researching and asking questions.
- Some children may “grow out of seizures,” but for many, it’s a disorder we will be managing for life.
- In attempting to treat our child’s complex epilepsy, we’re constantly trying to find a balance between seizure control and quality of life.
- People with epilepsy are often on multiple anti-seizure medications, and the side effects of these drugs are significant.
- Seizures can keep finding a way to come back.
5. Epilepsy impacts the whole family.
- Epilepsy impacts your plans on a daily basis.
- We aren’t used to this. You never get used to seizures. We try to be as prepared as we can, but the seizures take their toll on all involved.
- Everyone in our family has to know how to respond if our daughter has a seizure. We have family meetings whenever her medication or seizures change to go over the protocol.
- Every time my son has a seizure, I feel helpless.
- Even after four years of my daughter being grand mal seizure-free, I still startle at every cry, nightmare or abnormal movement she has at night.
- Epilepsy can make you paranoid. You’re constantly trying to interpret and decipher every little thing and trying to figure out what causes each seizure. It can make you feel crazy.
- I try not to, but a lot of times I’m just waiting for the next seizure. It’s a constant stress. Everywhere we go, we have to be prepared for it.
- You are never safe from seizures; there is never a time when you can be sure one won’t happen. The fear is always there, even on seemingly good days.
- Most epilepsy parents, I would guess, suffer from some form of seizure trauma.
- As devastating as it is, epilepsy can also bring a family together in genuine unconditional love and support, and forge bonds between members that are unique and special. We’re all in this together for the love of our child.
Clarification: A previous version of this article incorrectly claimed six types of seizures exist, linking to a WebMD article that explains six common types of seizures. For more information on types of seizures, visit the Epilepsy Foundation.