#epilepsysucks

There are over 40 different types of epileptic seizures

There are 4 types of epilepsies

When a person has a seizure that lasts for more than 5 minutes or has multiple seizures in a row, this is known as Status Epilepticus and it can cause brain damage and/or be fatal

People with epilepsy have a higher risk of dying than those who don't have it

Before a seizure, some people may experience auras. These vary between epileptics but common auras involve hallucinations and a feeling of deja vu

Epilepsy is very common

Anybody can develop epilepsy

Epilepsy is a chronic medical condition

Not all seizures involve convulsions

People with epilepsy are able to live normal lives

1 in 26 people will develop epilepsy

Each year, 150,000 epilepsy cases are reported in the United States

One-third of people with epilepsy live with seizures because no available treatment works for them

65 million people have epilepsy in the world

3.4 million people in the United States have epilepsy

You cannot swallow your tongue during a seizure, it is physically impossible

Forcing something into a seizing person's mouth can result in a chipped tooth, cut gums or a broken jaw

Epilepsy is not contagious

1 million people in the United States have uncontrollable epilepsy

The most common epilepsy death is Sudden Unexpected Death in Epilepsy (SUDEP) followed by status epilepticus

There are many forms of epilepsy, and one such form that not a lot of people know about is SCN8A epilepsy. It’s caused by a mutation in the SCN8A gene, SCN8A is a gene that affects how brain cells function.

The reason I make this post is because tomorrow (Sunday, Feb. 9) is worldwide SCN8A awareness day.

Nearly one year ago to the day my nephew, Otto or “Otto the Great” as we’ve come to call him, was diagnosed with this form of epilepsy. There are only around 250 cases reported worldwide, and this sweet little boy has the ONLY variant of this mutation, which means treatment and seizure management have been nearly impossible. My sister has been through doctor visit after doctor visit with no end in sight. He’ll be 2 this year, and has probably had more seizures in his short life than anyone could count. They last anywhere from 5 - 20 minutes, and can have up to 15 in one day.

I’m not asking for donations or anything like that, just awareness. The more people that know about this terrible condition, the more research can be funded.

What I am asking is, on Sunday, February 9th, wear purple. It is the color chosen to raise awareness, much like pink is for breast cancer.

Thanks guys, hearts and hugs.

Otto’s Journey: https://www.facebook.com/OttoScn8a/