Help Cassidy Find Hope

Hello my fellow epileptic salt shakers! And if you’re not epileptic, “that’s cool. Congratulations...What's that like?” (Some Pete Davidson to get us through the sad. :) ) If you don’t like Pete Davidson, “that's cool. Congratulations…What’s that like?”

Let me introduce myself. My name is Cassidy Doss and I’m eighteen years old. I enjoy writing, reading, watching anime (Naruto for life, bro), singing (Billie Eilish), animals (mostly dogs), pizza, and drawing-though I’m pretty bad at it.

When I was seven, I was diagnosed with absence epilepsy. Absence epilepsy-at least for me-feels like going on autopilot and looks like I am staring into space. Sometimes I participate in a conversation while having a seizure and when I come out of it, I don’t remember a thing that was just said. Other times, I just suddenly go quiet and, again, don’t remember anything. When I was diagnosed, I was told that they would go away with time but it was quite the opposite.

Over time, my seizures started changing and worsening, and I was diagnosed with Eyelid Myoclonic seizures with absence, or Jeavons Syndrome, at the age of thirteen. Epilepsy with Eyelid Myoclonia is a rare form of generalized epilepsy that can have several possible seizure types, also known as Jeavons Syndrome (JME). It is so rare that it accounts for only 1-2% of people with all types of epilepsy. Eyelid Myoclonic seizures are brief and repeated myoclonic jerks of the eyelids, which cause the eyeballs to roll upwards, and the head may move slightly backwards. These seizures are frequent and occur multiple times a day. 1 out of 5 people who have JME can develop eyelid myoclonic status epilepticus, which happens when they occur back-to-back over a long period of time. Lucky me...I am the 1 in 5! For me these repeated eyelid seizures often lead to tonic and/or tonic-clonic seizures and have caused me to be hospitalized and intubated multiple times. Though doctors are unsure why a person develops JME, they do know that stress, trouble sleeping, and photosensitivity are factors that can trigger a seizure. This syndrome rarely goes away and people will need seizure medications for life; however, medications to control eyelid myoclonia often don't work. In rare cases, the seizures will progress and worsen over time. The most common medications prescribed to help control eyelid myoclonia are Benzodiazepines-a medication I am allergic to. I have tried many alternative medications, however, none of them have controlled my seizures.

My freshman year of high school I suffered from my first tonic-clonic seizure, this was completely life changing. It just came out of nowhere. One minute I was sitting at my desk listening to my teacher talk and the next thing I knew, I was on the classroom floor surrounded by EMTs. When I came to enough to understand what was going on, I couldn't stop crying. The feeling was so scary, I have no way to describe how it affected me. It feels like I’ve lost time…

After countless failed medications and combinations, in 2018 I made the decision to receive a VNS Implant in an attempt to control the seizures. The VNS or Vagus nerve Stimulator can potentially prevent or lessen seizures by sending mild pulses of electric energy to the brain. A VNS is implanted under the skin in the left chest area. A wire is attached to the generator device and then wound around the vagus nerve in the neck. The device goes off every few minutes automatically but if I am aware of a seizure happening, the magnet that I wear on my wrist can be swiped to send an extra burst of stimulation to the brain. Doing this occasionally stops or lessens the severity of my seizures. One downfall is that the battery must be replaced through surgery every 5-7 years which is very expensive. The doctors were hopeful this would control my seizures. Although it has helped lessen the intensity of and occasionally prevented some of my seizures, I still experience breakthrough seizures which are continuing to get worse over time.

Unlike the popular keto diet used for weight loss, the medical version is very strict. I was admitted to Duke Children’s Hospital for four days learning how to properly follow the diet and safely get my body adjusted to my new way of eating (my mother did the diet with me). All food and water had to be meticulously measured, calculated and tracked. If the fat/calorie/protein/carb ratios were not perfect it would not be effective and could actually cause a seizure. It was very overwhelming and stressful for me. I could not enjoy my favorite foods, go out to dinner without bringing my own food, eat the same meal as my family and friends, and be a typical teenager-eating snacks and pigging out with my friends. I had to eat carrots with mayonnaise, put butter on everything, and drink disgusting heavy whipping cream to get in all my required fats. Can you believe that?! CARROTS WITH MAYONNAISE! Despicable! In the end it was me who tapped out...my mom caught me downstairs in the middle of the night eating bread. Oops? After discussing it with my doctor, it was decided that the stress wasn’t worth the minimal benefits I was gaining since it was not improving my seizures.

My whole life, I’ve been relying on people for rides, for time and patience. I have felt like a burden because of all the expenses and inconveniences that come with having epilepsy-especially with my special case. I’ve felt lonely, angry, sad, all the emotions you can think of. I hide these emotions from others and always try to be the “happy” one because I feel like it’ll make me feel like less of a burden. It’s not healthy and I’ve recently come to discover that hiding my emotions not only hurts me, but others as well. It’s hard to open up and let others help you. It can be scary and frustrating when it goes wrong-because sometimes it will, but it takes time to find your person so hold on tight and don’t let go. Living with epilepsy isn’t easy, it can be extremely isolating. I’ve distanced myself from my friends and family when things got bad and I've ended up losing them. It’s hard to keep and make friends when they’re scared of your medical conditions so it's “easier” to lose them if you push them away. I’m even scared of myself sometimes. What if I don’t wake up from a seizure? What if I have a seizure here or there or at an inconvenient time? All these ‘what ifs’ swarm my mind and it’s scary and unnerving because these things could actually happen. But I need to block the ‘what ifs’ out and focus on getting better so it’s less likely I’ll have a seizure here or there or at an inconvenient time because stress and anxiety are triggers for my seizures. So here I am, 11 years after my first diagnosis. Still looking for something that will cure (or at least manage) my epilepsy. Sadly, I have had to learn to accept the fact that this will never be a reality for me. But…I refuse to live with the “poor me” attitude. I am determined not to let epilepsy control my life.

I will be graduating in 2022 and my dream is to go away to college to become a vet tech. I love animals and have always wanted to help them as they’ve helped me by comforting me and making me laugh. Animals help so many people and I want to help them as a way of saying thanks. I had a dog I named Loki (I love Norse and Greek Mythology) and we were gonna train him to be my Seizure Assistance Dog…but he ended up having epilepsy, too. Isn’t that ironic? He recently passed away from a seizure and it broke our hearts-especially mine. He was my best friend and it really hit home when he died the way he did. As a vet tech I hope I can help to save an animal or at least provide comfort to its family. Unfortunately, going away to school is not a possibility for me right now because it's not safe for me to be alone. Having a Seizure Assistance Dog would allow me to go away to school and accomplish my dreams. Not only would the service dog be my new best friend but it would be the key to my independence, and make me feel less isolated, and be my lifeline. My Seizure Assistance Dog would be trained to remain by my side, protect me from injury, and alert others that I need medical help. If a seizure happens when I’m alone, my dog will comfort me and do things to get me breathing and awake like licking and nudging my face and body. With my dog by my side, I can do all the things I’m unable to do now like ride the city bus, go outside on my own, go to the grocery store-all the things that other people take for granted. This would make my life easier, safer, and happier.

Unfortunately, the answer to improving my quality of life comes with a very high price tag. The cost of having a Seizure Assistance Dog can be around $30,000 because of the intensive training needed. I will want to make sure my companion is the healthiest and happiest he can be so there will be continued costs like, food, medicine, and veterinary care.

If you can help by making a donation, myself and my family would be so grateful. Having a seizure assistance dog by my side will be life changing, and may even save my life someday.

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