This interview was conducted after Christalle volunteered to share her opinions on her experience using the SeizureLink System. While she did receive a free SeizureLink System during the pilot study, she did not receive any compensation for this interview.
Being diagnosed with any chronic condition can be scary, but when you add in the unpredictable nature of some disorders, it can be devastating. As a result, people can lose their independence.
Fear and apprehension forces many people with chronic health issues into a life of seclusion, robbing them of their independence and peace of mind.
This is where Christalle was and this is her story of how she became a warrior.
What’s your name and where are you located?
My name is , and I’m “keeping it weird” in Austin.
What do you like to do for fun?
I love being in nature, traveling (road trips are my fave), exploring, and being an advocate for the epilepsy community. I’m an introvert, so alone time is important to me, in order to recharge. When I’m not enjoying solitude or family time, I also love to be creative in various ways: painting, graphic design, or writing.
What’s your epilepsy story?
I had my first documented seizure at age 13, but I was misdiagnosed for 12 years. At the age of 25, I was diagnosed with Juvenile Myoclonic Epilepsy. I’ve lived with epilepsy for as long as I can remember. (I had seizures prior to age 13 that were not documented.) The diagnosis changed my life by empowering me to help others and start a non-profit organization called “Life Elektrik" It’s now my mission to offer support, education, and advocacy for adults living with epilepsy. I face physical & mental challenges (like most with epilepsy), but it doesn’t keep me from accomplishing my goals or experiencing and living life to the fullest.
What was life like before you tried the SeizureLink System?
Imagine being stalked everywhere you go… A tall, shadow-like figure always following you, lurking around every corner, watching you – just waiting to attack. You’re constantly filled with anxiety, always trying to outrun your unwanted companion, and you never know when they’ll attack. That’s what it’s like to have epilepsy. Constantly feeling stalked by something you have no control over. And when the attack finally happens, you’re helpless – often unable to call for help. The energy it takes to be constantly on alert is exhausting, and it’s a very stressful way to live- just waiting for something to go wrong.
SeizureLink has given me more confidence and reassurance. It’s nice to know that if something happens to me, my husband/ caregiver will be notified and can help me, if needed. SeizureLink has been helpful in allowing me to feel more independent.
What other alerting systems have you used before you tried the SeizureLink System?
I own another wearable alerting system, and I stopped wearing it over a year ago. I keep a seizure journal and food/mood journal to keep track of possible triggers, in case a seizure occurs.
What were the pros and cons of the other wearable alerting system?
The only real pro was feeling like I had more of a safety net, if something were to happen. The cons outweighed pros… because I received so many false alarms, I eventually stopped wearing the device. The wait period was insanely long to receive a device that didn’t work as well as I thought it should – especially for the price. To wait over a year to receive a product that costs over $200, only to realize it’s not living up to the hype, was disappointing.
What appealed to you about the SeizureLink System?
I was first drawn to the fact that it used muscle activation to monitor for seizure activity. That seemed to make more sense to me, as opposed to other devices I’ve tried. Since most of my seizures are tonic-clonic, I thought it would be a great device for me.
What was your biggest breakthrough while using the SeizureLink System?
Feeling more secure when out on my own or separate from my husband/caregiver definitely gave me better peace of mind and confidence to be independent.
How is life different now, after using the SeizureLink System?
On days when I’m feeling “off,” I don’t feel like I have to use the little bit of strength I have to call for help, if a seizure does occur. I can let SeizureLink do the work for me and focus on feeling the best I can until I’ve recovered. It’s much better to be as calm as possible, rather than panicking to yell or find my phone to call for help.
What does the SeizureLink System do for you that other things you tried didn’t?
When using the other wearable alerting system my husband/caregiver never knew if the alerts he received were emergency situations or false alarms. It became a race to cancel the alerts before he received a phone call alerting him to the (false) seizure. SeizureLink has provided more accuracy, which has in turn given us more confidence in our emergency plan.
What advice would you share with someone who is thinking about purchasing the SeizureLink System?
People will be curious about what the SeizureLink System is all about (most will think it’s an insulin pump), but don’t let that deter you from wearing the device. Use it as an opportunity to educate others, in addition to an alerting system. It’s a great way to end the stigmas surrounding epilepsy and helps bridge the gap between the epilepsy community & the general public.
Is there anything else you’d like to add? Anything you’d like others with epilepsy to know?
I’d like to end with my favorite warrior quote: “Fate whispers to the warrior, 'You cannot withstand the storm.' The warrior whispers back, 'I am the storm.” – Unknown
Find out for yourself if the SeizureLink System can help you. It’s the new standard in alerting systems.