Being 1 in 150

Name: Chris Jayme Gaines
Pronouns: They/Them
Instagram: that_1_infj

Hello Again Humans and Friends!,

I wanted to share a little bit about myself and my journey about having a rare disease. In order to be defined as rare, there must be no more than 200,000 cases of your diagnosis in the United States.

In efforts to give you all an idea of how rare my diagnosis is. I am 1 in 150 reported cases in the world. Which means that 0.000002% of the World’s Population has my diagnosis. My diagnosis is an extremely rare type of Epilepsy known as Autosomal Dominant Nocturnal Frontal Lobe Epilepsy. It is often inherited by families and there are instances where it is purely a new genetic mutation. Which happens to be my case and in response to being told it is a 50-100% chance to give my disorder to my children. I have decided against child birth. However, I will go more into my diagnosis more in a bit. I am going to share a bit about myself below.

My name is Chris Jayme and I’m from a small village in Delaware. I was adopted by an amazing family back in 2019 and has truly made me a stronger person. I’m still pretty close with most of birth family too. Family has always been a big part of my life. My families have taught me about becoming stronger than my diagnosis. They never gave up on me when I wanted to give up. That personally saved me a lot of grief and despair in my life. My adoptive family gave me hope and a voice. My biological family gave me a childhood that shaped me into who I am. Between my two families I have an older sister, a younger sister, an amazing sibling, and three younger brothers. Being adopted so late in my life was the best thing that has ever happened to me. They gave me a place of safety and peace. They also have given me more acceptance of my diagnosis. Now I’ll go get back to telling the story of my diagnosis.

About half my life ago I had my first seizure and it honestly changed me in life. It showed me that I had to be more careful and aware of my surroundings. It also humbled me since I used to be almost arrogant with my ego. I had to get a series of EEGs and an extensive Ambulatory EEG when we discovered I’d been having more seizures than believed. According to my EEGs I was having on average 3-5 seizures a night. In fact, there are some months where I can hit 20-40 seizures. These seizures sometimes can be measured in seconds. Sometimes they come in clusters that can range anywhere from 3 to 19 minutes at a time. Unfortunately, medicine doesn’t put these nightmarish events at bay. Imagine being unable to sleep because that means the possibility of a seizure. Ironically, lack of sleep is one of my biggest seizure triggers. Despite the limit my extensive seizure activity has placed on myself, I work my hardest to get through the challenges it provides. Some amazing things I have achieved are: 1,000 Volunteering Hours, Five 5ks Completed, Skydiving, Snorkeling with manatees, and even completing a Half Marathon. I actively try to better myself and those around me. I hope to one day share my story on national television to get my voice out there, since awareness is the only way anything can get done. Each of my seizures have had some level of impact in my life. However, I am going to share one that has an extraordinary impact on my life. It begins ironically, on World Epilepsy Day (March 26th) over a decade ago. I had a seizure and hit the back of my head “just right”. When I awoke, I couldn’t see all too well. At first I thought my glasses flew off my face. I had asked my friends to hand me my glasses. They told me they were on my face still. I panicked. I closed my eyes for a good minute. Took my glasses off. Felt them. There was a giant crack in the lens. I felt as if that was the answer to my problem. I had hid the incident from my biological father. I immediately told my biological mother though. We got me checked out. Turns out, the way I hit my head was a pure fluke. No noticeable damage. A few days later I went to have my vision tested. Things were bad. The accident took my peripheral vision, my depth perception, and a good part of my central vision. To this day, with glasses on I can see up to 18 feet (5.5 meters) in front of me. It has been a humbling experience.

Thank you a ton for reading. Likewise, if you have any questions about my condition please message me or comment. I will do my best to get back to you as quickly as I can. If you wish to donate to my GoFundMe in order for me to get a seizure response dog the link is attached here: https://gofund.me/ccef690b

Much love.

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