Purple Day Hero: My Family and Epilepsy
Purple Day Hero: My Family and Epilepsy. With Purple Day coming up on March 26th, 2024, I wanted to share a bit of my personal story about epilepsy. It’s a cause that’s close to my heart, and I think raising awareness is so important.
Purple day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. Last year, people in more than 85 countries on all continents participated in Purple Day!
Our Family’s Journey with Epilepsy
Epilepsy has touched my life in a big way. It’s a neurological condition that causes seizures, and it affects millions of people worldwide. Learning more about Epilepsy and different seizure types can be a big help.
In my experience, epilepsy can be tough on both the person with seizures and their loved ones. When I was diagnosed at 14, my world shrunk dramatically when seizures became a part of my reality. Suddenly, venturing out with friends and just the basic teenage stuff felt like distant dreams. The fear of a seizure striking while I was out became overwhelming, keeping me glued to the safety net of having my parents by my side. It was a time when the independence I was starting to build had to be put on hold, and I relied heavily on my parents’ support. Luckily, I have been seizure free for a very long time.
Finding Support and Dealing with Stigma of Epilepsy
Having epilepsy can feel isolating. For instance, I remember telling my “best friends” at the time, thinking they’d be supportive. How wrong was I! They completely ignored me, and it took a while to find true friends who understood.
There’s also a big stigma around epilepsy, with some myths like it being contagious or affecting intelligence. This can make things even harder. In fact, my doctor back then actually advised my parents to be selective about who I told about my condition. It’s crazy to think we live in a world where there’s such a stigma around a medical condition.
Living with Epilepsy: Daily Life and Medication
Epilepsy is often an invisible illness. People don’t always realise the daily impact it can have. For me, it was the constant tiredness from medication, the restrictions on things like staying out late or swimming alone. It wasn’t easy, but I learned to manage it
One of the biggest concerns for me, of course, was having children. Would my epilepsy be passed on? The doctor couldn’t give me a definitive answer, which was nerve-wracking.
Epilepsy and My Daughter
Fast forward a few years, and my biggest fear came true. My daughter had a seizure at the age of five. It was terrifying, and it turned out she also has epilepsy. The guilt of potentially passing it on was overwhelming.
Seeing her go through diagnosis, medication, and the side effects was heartbreaking. Medication doesn’t always control seizures, and there’s always the worry of them happening, especially when she is not in a controlled environment like school. Unfortunately, some kids can be cruel, mimicking seizures and making fun.
Thankfully, my daughter is a fighter. She’s open about her epilepsy and doesn’t let it define her. She confronts bullies and takes charge of her health. It’s inspiring to see her strength.
Living with Epilepsy: Moving Forward
Epilepsy is a part of my life, but it doesn’t control me. I’ve learned to manage it and live a full life. My story is just one example, but it highlights the importance of raising awareness and understanding for epilepsy.
What to do if someone has a seizure
If you see somebody having a seizure, there are some simple things you can do: more info on NHS website
- only move them if they’re in danger, such as near a busy road or hot cooker
- cushion their head if they’re on the ground
- loosen any tight clothing around their neck, such as a collar or tie, to aid breathing
- turn them on to their side after their convulsions stop – read more about the recovery position
- stay with them and talk to them calmly until they recover
- note the time the seizure starts and finishes
Join the Purple Day Movement!
On Purple Day, we wear purple and spread the word about epilepsy. Let’s work together to break down the stigma and create a more supportive world for everyone living with this condition. So much more research is needed!
Here are some resources for learning more about epilepsy:
Let’s make Purple Day a day of awareness, support, and hope!
danishiftingtides
I am a midlife woman, embarking on a journey of self-discovery, embracing change, and redefining who I am without the constant hum of children filling my life. My first born daughter turned 18 and is starting out in her own life. My son is 13 years old and is becoming more independent and is developing his own interests.
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