Why My Family is Rocking the Color Purple Today Epilepsy Awareness
Today March 26 is Epilepsy Awareness Day. It is a day set aside to show those that are battling Epilepsy how much we love and support them. Before I tell you why we are rocking purple let me tell you a few facts about Epilepsy. It is a disorder of the brain that causes recurring seizures.
- First it is not a disease, it is symptom of a brain disorder.
- Between the episodes of seizures people with epilepsy are perfectly normal and healthy.
- Roughly 1 in 26 people develop epilepsy at some point during their lives.
- About 200,00 new cases are diagnosed each year
- Around 2 to 4 million people in the US and up to 50 million people in the world have it.
I know these statistics to you don’t mean anything unless you have someone you know who has this disorder. Before January 13, this disorder was somewhat of a mystery to our family. We have cousin who has this disorder but it was just that a disorder but it has quickly become a reality to our family. Gracie, my youngest, experienced the first of two seizures on that January day. It wasn’t until almost two weeks ago that she was finally diagnosed as having epilepsy.
This is something that Gracie has struggled with. She is scared she is going to have another seizure. Not knowing what triggers her seizures scares her as well. She is slowing adjusting to having to take medicine twice a day to keep this disorder under control. It has affected her sleeping pattern as well as caused her IBS (irritable bowel syndrome) to flare up. And she has been an emotional roller coaster as well. Also there are days that she doesn’t feel well enough to attend school because of major headaches or lack of sleep. She is currently on half days of school alternating going mornings and afternoons.
It hasn’t just effected Gracie, it has effected our whole family. I haven’t been able to work my full time job since the seizure. Going to doctor’s appointments and her attending school half- days did not work with my schedule. So that has caused a lot of financial worry on my husband and me. Wondering how we are going to pay bills, it has been a struggle for sure.
Her older sisters have been absolutely supportive of their little sister. But I sometimes feel like I am failing them as a mom because their sister needs so much more of my attention right now. There are days that I am torn because I want to stay home when Gracie is not feeling well and but I also want to attend Mikaela’s soccer game as well. It is hard when you have one child that is going through something like that but you want to be there for your other children as well.
I will say that Epilepsy doesn’t just affect the person who has it, it affects the whole family. So please today I urge you to look into your closet and pull out that purple and wear Purple to show your support for Epilepsy Awareness for all those families who are dealing with this disorder. Post pictures all over social media to show that you care.
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I truly don’t know anyone with epilepsy, and I didn’t know the statistics – but I do know it’s widespread and we need to be more educated about it, especially in our school system. Thanks for the information about the awareness and I shall remember you.
While I don’t have personal experience with a family member having epilepsy, I can totally understand your statement about a disorder like this effecting the whole family and not just the person with the condition. Yes!!
What a great cause to support. I have a friend who has epilepsy and its hard seeing the seizure’s that effect her. This is such a great post! Awareness is always the key!!!
i had seizures as a kid. not epilepsy, but still scary. and a good friend of mine has epilepsy- i remember the first time she had a seizure near me. that fear has stayed with me my whole life
My oldest son has a seizure disorder. It comes and goes, but it sure disrupts his life and our family. My sister also has epilepsy. The memory of watching a loved one have a seizure and not being able to help them stays with you. I had no idea today was epilepsy awareness day! Thanks for sharing.
My brother has Epilepsy and he has it really bad. He has epileptic activity every 15 seconds when he sleeps. He is light sensitive and his triggers are just about everything so he has to live life in the dark. It is a hard life but he is so kind, sweet and loving..
You are right that it can strike at anytime. I remember being in college and a student next to me had a grand mal seizure out of nowhere. He’d never had one before.
This is really important information to share.
Those are scary statistics. I know a few people with kids who have epilepsy. We are just starting testing with my own daughter. it is pretty scary.
I am an epileptic though I have not had a seizure in about 3 years now I think. The last one I had was in the middle of a Sam’s Club store with my mom and 3 year old with me. My seizures started when I was in middle school so I’ve dealt with them for about 20 years now. I have to be careful with the video games that my kids and I play. I didn’t get my drivers license until I was properly medicated and seizure free for a good while and I was by then in my 20s. It surely was difficult at times feeling left out on things as a kid but I knew it was for my health.
thanks for sharing this post! it’s good information to share