I want to change the way Lyme Disease and its co-infections are talked about, diagnosed, and treated. My journey for advocacy started when I was 17, junior year. One day in the locker room while changing for gym, I overheard two girls in the next row over. One girl explained that she found a tick on herself. With relief, she went on to say she was able to identify the tick with the tick ID card she was given at the presentation yesterday. In my row, I quietly did my happy dance! I was the person that handed out the tick ID cards during my Civic Leadership Club presentation. This presentation was the start of my Lyme Disease Awareness Campaign. That moment taught me that I could make a difference! It all started a long time ago... you see, twelve is my lucky number; it has been with me since birth. I was born on 12-12-2000, the year of the dragon, and turned twelve on 12-12-2012, also the year of the dragon. Twelve is also the number of doctors I saw before finally being correctly diagnosed with Lyme Disease. The symptoms started with a terrible rash when I was only eight months old. Growing up I played outside like most children, and I can recall at least one tick bite. My family did not understand the dangers of possibly contracting Lyme Disease because of the lack of awareness surrounding it.
Over the next fifteen years, Lyme Disease festered and grew in my body creating multisystemic eruptions causing body pain, swollen joints, and crippling brain fog. Searching for answers, doctors diagnosed me in twelve different ways, including bipolar disorder, rheumatoid arthritis, lupus, dyslexia, and ADHD. My goodie bag of debilitating symptoms and no clear-cut answers left me with crushing physical pain, and emotionally distraught. When Lyme disease goes undiagnosed for years, symptoms can show up as paralyzation, alzheimer's, insomnia, major memory loss, paranoia, major depression, and suicidal thoughts and actions.
At the age of fifteen, I was finally diagnosed with Lyme Disease and its co-infections. My mom and I wept with relief. Now I could finally start my road to recovery. My doctor explained to us what the Lyme bacteria, Borrelia burgdorferi, does to the body and why it is so hard to diagnose. Spirochete travel to organs, bones, and muscles drill into the body and create biofilms. Bacteria clings into groups and covers its self in a sugary layer and rids itself of its protein, making it harder for the immune system to target and destroy. This is why testing is inaccurate. Out of 100%, 50% of the people who come in for testing get false negatives. I believe that this is an injustice and needs to be fixed.
The Global Lyme Alliance says that 400,000 people a year in the USA alone will contract Lyme Disease and these are only the people getting correctly diagnosed. The Nations Institute of Health estimates that "there are possibly over 1,200 Lyme and associated diseases (LAD) suicides in the US per year.”
Tick love the heat. With rising temperatures from global warming, the problem is only going to get worse. Children are the most susceptible to this disease because it is contracted through a tick bite, and ticks live outside. It is easy for ticks to cling to an animal or human then feast on its prey. Ticks can be a small as a poppy seed and no bigger than one-fourth of an inch tall.
In pursuit of my recovery, my family and I encountered confounding insurance roadblocks, mysterious treatment protocols, the debate within the medical community, and unreliable diagnostics. The experience inspired me to create a website, which I launched in mid-July in 2018, Healthforthesoul.net I share my long and winding story, provide tips, offer inspiration, and create a space for communication. Right now my Instagram for my website in reaching people in several countries, and I hope to reach and heal more people!
In 2017, I formed a partnership with the Global Lyme Alliance. I am an Ambassador and have become very close to the founders of the organization. In 2018 and 2019 I went to their yearly gala in Connecticut and Florida. There I met the CEO Scott Santarella and founders Julia, and Diane. After hearing their story about why they started their organization, their children both suffering from this disease, it made me even more determined and driven to take action. Their mission is set on finding a cure for Lyme and spreading awareness. With some help from my mom, we organized a panel discussion featuring experts on Lyme Disease.
After seven months of planning, I secured three experts, one scientist, one doctor, and one community educator, to serve on the panel. My high school agreed to host the evening, and on the night of the event, I arrived early to greet speakers and welcome attendees. Within minutes, the library was packed, and we realized that we would need more chairs! According to my guidance counselor who attended that night, this was the biggest turnout for an evening program the school had ever hosted; confirming how many people it truly affected. That evening, I facilitated a discussion with the panelist, and we took more than two hours of questions from the audience. Although there were still unanswered questions, my teacher told me to wrap things up because the staff had to close up the building. So, with the promise of more talks, I closed the meeting. I believe people left feeling empowered and hopeful. But there was more I could do. So I am taking the next step.
I have had a deep fascination in Neuroscience since the sixth grade. In the summer of 2017, I applied to and was accepted to Brown Pre-College program in neuroscience I lived there for a week and loved the course material. I am currently taking an AP Psychology course in high school, and we have spent most of the year on neuroanatomy and now talking about disorders. I also signed up for and completed an online neuroscience course with The Amen Clinic. The course took a year to complete. In the fall of 2019, I will be attending Dickinson College. I am very excited! I will be taking psychology, neuroscience, educational studies, philosophy, environmental science, immunology, and vector disease, the building blocks of learning more and for my career. With my Brown pre-college experience, I was in contact with Rebecca Reece a Lyme advocate working at life span, and an Assistant Professor at Brown's Medical school. Over the summer I will be doing an internship at Lifespan hospital, gaining more knowledge about the disease and the best way to help patients.
Traveling is also a big part of my journey, I have read books on Lyme, such as Yolanda Hadid's book "Believe Me" and Allie Hilfiger's book "Bite Me". Both women talk about traveling all over the world to receive treatments with the promise of a cure. I hope to do the same, writing about treatments and what experts say about Lyme and treatment protocol. I believe that this will help those who do not know what the next step is. While traveling, I plan to attend the University of Helsinki in Finland, taking part in the education program and vector-borne illness courses. Finland has revolutionized its education system, something I am going to learn more about. As a child, I struggle with learning material because of my disease. Because of that, I intend to learn about the education system and bring my experience and what I have learned to the table to help the next generation.
I want to change the way Lyme Disease and its co-infections are talked about, diagnosed, and treated, because I do not want children or adults to suffer the way I did, twelve years with no answers only suffering. I tried to hurt myself to the point of no return at age five because of the disease. My sister and mom are both dealing with Lyme and its co-infections as well as my friends. I have a friend who has Lyme but before being diagnosed was put in a mental hospital, she was only in high school. I also lost a friend to what is believed to be Lyme and its co-infections. I can not sit around and wait for another person to be taken if it can be stopped.
I believe that a mentorship that focuses on the women and how truly powerful we are is vital. I am growing up in a household where the man sets the tone for the dinner table, and I can not share my opinions for fear of poking bear. Feeling powerless is a daily, not only with my dad but also with my disease. To be reminded that I have a voice and that women around the worlds voices matter is going to change the world. And it has to happen now! I hope to see the day when a women can stand up and know that their voices are heard and recognized. The power of the girl is amazing, and one of a kind. It cannot be squandered. Through the mentor ship I hope to find ways to lift the women around me up and to empower the next generation.
My mom has helped me through my brightest and darkest days. She has been like a soundboard helping me bounce back my ideas. New ideas opinions, viewpoints, and advice are always beneficial, and great things can come from them. I believe the one-year mentoring program at Toptal would be instrumental and a one of a kind experience that would benefit me throughout my life and help me reach my goal to change the way Lyme Disease and its co-infections are talked about, diagnosed, treated. This disease has stirred a deep intellectual curiosity within me. It has taught me how to solve difficult problems. I have learned how to overcome my weaknesses and that my disease does not define me. Because Lyme does not have a treatment protocol, I have become my own experiment of wellness and recovery. Although it’s hard sometimes, I still get up every morning, do my best in school, and participate as a year-round athlete. The empathy that I feel towards others has multiplied since sharing my story. Most profoundly, it has sparked a deep commitment to help and educate others in the ongoing search for answers.