I have had hyperacusis since I was six years old. I also have several other medical conditions, including being low vision legally blind, chronic migraines,seizures, sensory processing disorder. Growing up, my childhood has been very different than most kids, I have been unable to attend social events, stores, most public places, listen to music, wash dishes, go on vacation, or even take showers because the noise causes me extreme physical pain and lingering migraines. Most of the time I would (still do) stay in my soundproof bedroom, closet, or grandmas underground basement. I experience pain on a daily basis just from noises like airplanes, or phones ringing. Imagine that silverware touching a plate felt like you were being stabbed in the temple and ear, and that people talking and laughing felt like you were being punched in the head, and you get a migraine afterwards. Unfortunately growing up most Doctors didn’t believe me about being in physical pain and often thought that I had an emotional or psychological condition. There is also very little research done on pain hyperacusis, so I didn’t even have any evidence to use in my defense. Due to the rarity of hyperacusis and the lack of research, I was often subjected to sound exposure treatments that increased my pain and worsened my hyperacusis. I have been on and off of Home & Hospital many times and in elementary school, and attended several different educational placements. attending school is intensely painful for me, and I am often absent due to the lingering migraines I get from noise. In Tenth grade, I had a project where we had to create a bill proposal for government. I decided to do my proposal on having the state of Maryland create a Hyperacusis school program. In February, for the first time I was given a chance to speak and tell my story about being a student with Hyperacusis and what it’s physically like for me every day. I did a presentation in front of the Howard County Department of special education and made several recommendations. Hyperacusis Research also continued to publish more peer reviewed articles in medical journals about pain Hyperacusis, and for the first time they were given a grant by NIH.
My goals are to educate and raise awareness about hyperacusis, help connect people who have hyperacusis or other rare or chronic pain conditions with each other, put in place laws and policies to help people with Hyperacusis and other disabilities. Once the COVID-19 quarantine began and I’ve been able to stay in my bedroom and closet most of the day and I’ve been in so little pain, I decided to take things a lot further. I created a website, Facebook, Instagram, and YouTube called Hyperacusis awareness to try to help people with Hyperacusis. I am now a Rare advocates representing everyone advocate, a WeGo Health advocate, and a member of Young Adult rare representatives (part of the EveryLife Foundation. I am also a writer/aspiring author, and following Hyperacusis Research
