Hi! My name is Pujitha, and I’m from India- but I’ve lived in Michigan for nearly my whole life. I grew up as a happy and energetic kid, always wanting to run around and play… but towards the end of June before 8th grade in 2015, I started throwing up. We thought it was food poisoning, but then the left side of my face started to droop too, with increased imbalance. My Pediatrician thought it was Bell’s Palsy and a few Dentists thought the same at the time… so I was given steroids for ‘Bell’s Palsy’. But nothing stopped. The morning sickness and imbalance didn’t improve.
Despite what I was going through, I pushed myself and kept going to school, telling myself I was fine. Until a family friend, a Neurologist, suggested that I have an MRI after my mom told her about what was happening.
That MRI revealed tumors on either hearing nerve. I remember them pulling us into a room and slowly explaining what they found… I was devastated. The big words were enough to scare me then and make me cry. On the same day, I was referred and taken to Children’s Hospital, where they debulked the left tumor because it was the largest and was pressing against my brainstem. And that’s when the gradual hearing loss in my left ear turned into complete hearing loss in my left ear. After my surgery though, I had a lot of complications and stayed over a month in the hospital with doctors visiting and therapists trying to get me back up on my feet.
However, my positivity didn’t leave with my parents’ support. I tried to live my life regularly… though Avastin for about 2 ½ years proved to disrupt my life in different ways still. And now that I look back at it, I was also fighting many monsters inside without telling anyone. In the last few months of those years though, my dose of Avastin was doubled, which started affecting my kidneys, so it was stopped.
After that, I went on and off of many medications (Lapatinib, Evorolimus, etc.), but nothing seemed to help the tumors… and the side effects weren’t fun at all.
From my experiences, my passion for Science only grew with my fascination for ancient medicines. I started researching a lot in high school and writing about them- I even used them to help manage my symptoms from medications and NF2! They helped a lot! Especially in combination with medical intervention.
Eventually the day I’d been hoping wouldn’t come came in 2020, the year I was graduating high school. I stopped all medications because the tumors grew enough to be even more dangerous. After 3 debulking procedures in April of that year, I became fully Deaf… and experienced a lot of trauma due to complications again and communication issues.
I felt isolated and sad until the music therapist reintroduced me to music… through vibrations. I found my coping mechanism again, and with the help of my parents and little sister, I got through it. I was finally sent home in July, then after a few more months, my surgeon used the Gamma Knife on my right side. But then we found that my left tumor was too big to radiate on- It grew again. So I had another surgery in May 2021 and Gamma Knife in September for the left tumor.
I thought things were fine then. I would finally be going to college without all of these other things coming in my way. It was going okay until I started having hip and back pain. After some confusion, I had a spinal scan in 2023… something that had been neglected because things always seemed stable there. That scan once again, revealed more tumors. The one causing pain was big and was pressing on a nerve, so they immediately went to remove that in April.
I have more tumors on my spine, but all we can do is watch and wait right now… though, my family and I pushed to get my tumor sequenced… so we can find any medication to help in the meantime…
Now 21, my hope is still on Gene Therapy. Ever since I learned of it in my Genetics class in High school, the concept fascinated me and I wanted to learn more- I want to take part and contribute beyond spreading awareness through videos. Not only to heal myself but in hopes of healing others too.
I want to live again, not in constant uncertainty and fear. But happy and free!
NF2 isn’t only a physical battle, it’s also a huge mental battle, one that I’m constantly going through… and won’t give up on.
I’m glad about the big support from my family and friends through it all… I don’t know where I would be without them. Especially my mom. It’s just as hard for her to see me like this, but she continues to support me in any way she can while always trying to learn more.
With this network and the news of better therapies starting to arise… and so much awareness starting to be spread… we will fight through this. We will find a cure, I’m sure of that.