World Encephalitis Day
By: Aliyah De Vivero
Warrior.
“You may encounter many defeats, but you must not be defeated. ”
More than half of the world’s population is not aware of Anti-NMDA receptor encephalitis, an inflammation of the brain caused by an autoimmune attack. I am here to use my experience and my voice to raise awareness and become an advocate for the early detection and prevention of this rare form of encephalitis. My goal is to raise money for one of the two charities in the United States that is dedicated to helping raise awareness and advocate for victims and survivors of this terrible disease. Profits made from the sale of my custom design shirts, sweatshirts, and hoodies will go to The Autoimmune Encephalitis Alliance. Their mission states, “The Autoimmune Encephalitis (AE) Alliance strives to educate physicians in evidence-based best practices for the diagnosis and treatment of AE. Successful patient care requires a collaborative, interdisciplinary approach. The AE Alliance endeavors to establish a supportive community of patients, families, and caregivers, so that no one faces autoimmune encephalitis alone. The AE Alliance works to facilitate scientific research into the causes of AE and its treatment, with confidence that a cure will be found.https://aealliance.org/about/mission-history/
My name is Aliyah De Vivero and I am a survivor of ANTI-NMDA Receptor Encephalitis. Two years ago, September 2019, I encountered a very traumatic pause in my life. As a result, I missed the 1st semester of my high school senior year. I was hospitalized for over 2-months with the 1st spent in a Pediatric Intensive Care Unit and the following month at an intensive rehabilitation
hospital. I was hospitalized at three different medical centers while teams of doctors worked diligently to figure out what was wrong with me. I suffered from several symptoms such as seizures, insomnia, inability to speak, walk or eat including acute short-term memory loss. Unfortunately, I have no memory of the onset of my illness and only having recalled bits and pieces towards the end of my hospitalization. I am extremely fortunate to have access, treatment, and accurate diagnosis from a world-class teaching institution that enabled a quicker than anticipated recovery which lasted months. I’m grateful to be experiencing a sense of normalcy now in my life. Others who suffer from this disease are not as fortunate and are in a constant battle with recurring symptoms. I’ve worked extremely hard since my discharge and have returned to school. I’m happy to report that I am in my second year of college. Instead of being weakened, I’ve been strengthened by this unforgiving disease and stand today, a stronger woman than I was.
This year I have decided to open up more about my own personal experience having previously dealt with this disease and share/educate on the technicalities and realities of my illness. Anti-NMDA Receptor Encephalitis is a disease where antibodies attack the brain causing it to be inflamed. Anti bodies come from a tumor inside the body and this causes the brain to malfunction. Due to the unfamiliarity doctors have with this disease finding the source of the tumor is difficult. Not only finding the source of the tumor is difficult but treating it equally challenging. This is why this disease has a high fatality rate. I was fortunate that my teratoma was found. According to Google, “Teratoma’s are tumors made up of tissues, such as hair, muscle, and bone. They occur most often in the ovaries in women and the testicles in men”. I had a teratoma on my right ovary which has been and still is a very hard thing for me to accept because I was not entirely consenting or conscious due to the condition I was in when this surgery occurred. I am lucky to have amazing parents who consented on my behalf. This surgery overall saved my life, and shortly after I started to regain my ability to speak, walk, eat, and my memory slowly recovered to normalcy. I continue to share my story and advocate for encephalitis. Education is the most important thing and 70% of the world has no idea what this disease is. Through my advocacy and education, I hope to raise awareness and decrease this high percentage in any way I can. I’m learning to make peace that not having two ovaries makes me any less of a woman it just makes me more of a badass.
This year's fundraiser I have come up with a design that is unique to my own personal experience with this disease. Thanks to the help of my dear friend Evyn Gensurowsky who helped create my vision into reality. Funds for this campagin will go to the Autoimmune Encephalitis Alliance. I am hoping to raise $1,000 and sell 150 items. Please share and donate to help me reach my goal.
Bonfire Campaign: https://www.bonfire.com/red4wed2022fundraiser/
