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Neurofibromatosis type 2 was NEVER on my bingo card

For Neurofibromatosis Awareness Month, Pujitha Kolla writes about her experiences with a sudden diagnosis of neurofibromatosis type 2 (NF2) and how it became a catalyst for her passions in life. Remember, your obstacles don't define you, they shape you into someone even more powerful.


Pujitha Kolla


Neurofibromatosis type 2 (NF2) was NEVER on my bingo card—it still isn’t. But here I am. 


It seemed to appear out of nowhere in middle school, in 2016, and I was scared—I thought my story was going to end that year…but it didn’t. Am I still scared? Kind of. My feelings about it are complicated, but happiness isn’t one of them. However, I am thankful—in a strange way. The more I think about it, the more I appreciate it. It made me look at life differently and increased my empathy and determination. It's crazy how I ended up here. 


You’re probably looking at this like, “Girl, WHAT DO YOU MEAN?”


Honestly, the past me would agree with you…but current me, too. How did I even get here? It’s been a very bumpy ride with this rare disease. I still remember my first surgery like it was yesterday—it was terrifying. I was only 13 and knew next to nothing about surgeries, and don’t even get me started on the medical words. 


We went straight to the hospital after my first MRI. I had already cried with a PA after it, and then I broke down at home. So I was blank and scared in the car. I didn’t know what would happen, if I would go to school again, or if I would be okay. But when I came out of it, something shifted. I had to go through lots of therapy to be able to do what I took for granted before. 


I also realised that fear didn’t mean that I was weak—it meant that I was growing.

It isn’t something anyone would wish for, and I would never wish it on anyone. However, I won’t deny that it made me appreciate life more. And it also grew my understanding of the world around me… especially the people in it. Everyone is fighting a battle you may not know of—I’ve always believed in that saying, but NF2 brought me to a whole new level of understanding.


Life has a funny way of redirecting you, even when you think you have it all figured out. What do I mean by that? When I was younger, I wanted to be a doctor. Well, actually I kept jumping between doctor and scientist, haha. But my main goal was to help people. I wanted to help them get better, to help be the cure…to simply, help. I didn’t want people to suffer, and I especially wanted them to have options.


Sadly, my dream of becoming a doctor was wiped clean. It would be difficult for me to balance medical school and treating patients while being a patient myself. That didn’t stop me, though! Who said NF2 could choose for me? My shift struck me in my high school genetics class. I had partially signed up for it because I wanted to understand the mechanisms behind NF2, but it became a catalyst that led me to my passion for research. Biology was interesting, and molecular biology especially fascinated me…I still remember that day when we were talking about chromosomes—my brain lit up with curiosity! For once, I felt like I was understanding my condition, not just living with it. So, I went for it! Yeah, it’s not what I initially thought I would go for, but it’s even better. 


Time and time again, NF2 tests me with new obstacles—whether it’s communication barriers, treatments, appointments, headaches or something else (the list is too long!). But through every obstacle, I learned how to be resilient, flexible, and adaptable. 


MOST IMPORTANTLY–I learned not to give up even when people underestimated me or judged me because of my hearing or disability.

Fun fact! You do not need hearing to learn and excel at something, nor do you need eyes. You just need yourself, an open mind, and your determination. People will often try to point out your flaws, even doctors. I’ve been told “you can’t now” when I proudly shared something I knew how to do. Don’t believe them. 


The word ‘impossible’ literally says ‘I’m possible'. It doesn’t have to be perfect, just do your best!

Something that NF2 pushed me to do—kind of against my will at first—was advocate. Now, how did I end up doing that? It became more pronounced after I lost my hearing. I was forced to speak up, even in uncomfortable situations. And I was kind of shy before, but that experience grew with me. I’m not as afraid or nervous anymore (well…sometimes I still am). I’m also able to stand up for others. That’s something I never imagined! But now it’s one of the things that I’m proud of.


So, if you’re reading this, I want you to know that you are stronger than you think. NF2 may have thrown challenges my way, but it also showed me how resilient I am. Your obstacles don’t define you; they shape you into someone even more powerful. 


You’re allowed to struggle and still keep going. You’re not alone. You got this!



What is neurofibromatosis type 2?

It's a rare genetic condition where non-cancerous tumours grow on nerves in your brain, inner ear and spinal cord. There’s currently no cure, but treatment can help manage your symptoms.¹



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