During conversations I’ll appear completely well and alert, but internally I’m losing my ability to understand others words and start to forget where I am and how I got there. Outwardly there is no way for me to signal that I am having a seizure because I lose my ability to speak. The recovery afterwards leaves me confused and apologetic towards the people I’d been speaking with, because an entire conversation might need to be repeated.
In more severe cases my epilepsy becomes visible to everyone. These seizures take the form of either vomiting or crying hysterically seemingly out of the blue. During these larger events I am completely motionless and unaware of what is happening around me - even losing the ability to recognize faces or surroundings. Recovering from these more severe episodes is a lengthy process, which involves enduring short-term memory loss for up to an hour afterwards.
After trying a number of medications my seizures continued to worsen, causing me to drop out of college in early 2018. My epilepsy has since been declared medication resistant. Without the aid of something outside of pharmaceuticals, my seizures are predicted to worsen over time. Thankfully, the VNS device was presented to me as a potential solution - though to be clear it is still not a ‘cure’. It’s a device which is placed just below the skin attaching itself to the vagus nerve, which, when stimulated, could stop a seizure in its tracks. Individuals with this device are also provided with a magnet so they can activate it at will, thereby giving them the freedom to do things they might not have been able to do before.
There are so many simple things in life that I am unable to enjoy due to my condition, like going on walks, swimming, cooking, or driving. In short, the VNS implant would give me the confidence and freedom to do things I might not have been able to do before. Your generosity would be aiding me in achieving independence.
If you’re curious about the VNS device and want to learn more about it, you can see additional information here.
Thank you for taking the time to read about my condition, anything and everything helps!
- Carey Lambert
- Darlene Garcia
- Amaya Mckenzie
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