I was diagnosed with NF2-SWN nine months ago (21 years old) last summer, on July 21, 2023. It was the most challenging day of my life, to be honest. I went to check my ears because I had hearing problems, then did an MRI, and we found two acoustic neuromas. Then we did another one, and we found two more tumors in the spinal cord. Six months later, I did my MRI to check, and we found TEN more tumors. That was a BIG SHOCK! None of my family has NF2-SWN; does that make me special? Huh, I don’t know, maybe yes!
It really changed my life; it’s like someone pressed a restart button on my life. I have to learn to do things differently as I am (almost) half deaf; my balance issues are getting worse with time. My tinnitus is really a pain in the (you know). It’s a bit hard right now to run or dance; sometimes I lose my balance and fall. I think this is somehow funny. (We need humor to handle this, trust me). NF changed all my future plans. It makes me anxious thinking that one day maybe I will be deaf or have facial palsy or any kind of paralysis because of my 14 tumors. My family is afraid too. I’m constantly thinking, what if it gets worse? I’m only 21. It doesn’t let me do a lot of things. I just go to college and then come home and watch the show Friends all day and all night. I’m not that active anymore. I get tired quickly. I’m unemployed too, and sometimes I think if I go deaf, will I ever work again? What about my dream job? Will I dance or even hear some music at my wedding? There are a lot of things that have changed. Will I ever enjoy things like now? The symptoms don’t let me do too much, but it’s okay. I’ll find a way. But the “worst” is my fear about a future pregnancy. I don’t want my baby to go through the same, and this is something that hurts me a lot. It hurts me more than any symptom of NF and any pain. And there’s a lot of pain. But there’s a lot of strength inside of me, too!
(My defining moment) was the day I found out that in 6 months, my body truly turned against me and “produced” 10 more tumors. In six months, it was unbelievable and my left acoustic neuroma grew 1cm in that time. That moment was when I understood we have a problem here. This moment changed everything. I knew that my worst enemy was my own body, and this hurt me a lot, but I know too that I’m stronger than this and I’ll fight it. I will be living with those tumors for God knows how many years, and I’ve been doing great (my life before diagnosis was perfect), but now I’m afraid. Every day, I’m afraid about what’s coming. But I’m grateful that I’m still standing and fighting it. NF made me appreciate life more and love myself more and more to the level that I now adore myself. I protect myself, and I’m my number one priority. I’m so proud of handling this. People outside my family always tell me that I’m doing perfect. I can not let this thing (NF) win against me. It’s unfair. I’m only 21, and I have a lot to do, a lot to live, and a lot to see.
As I said, I’m 21 years old. I live in Athens, Greece. Currently, I’m studying marketing. I don’t have a job right now, but soon, I will look for one cause I hate staying home, haha. I live with my boyfriend; he is my biggest supporter and does anything to make me happy. I was afraid he would leave after my diagnosis, but no. Trust me, he is doing better than me sometimes in handling it, haha. I love dancing and music, and I love books, too. I’m obsessed with books. I want someday to have a big room full of books. And what makes me truly happy is dancing for hours with my favorite people. The last one is fashion. My mood depends on my outfit, trust me. I can’t even go to my MRI if my outfit isn’t perfect!
Favorite Song
My favorite singer is Abel Tesfaye or The Weeknd (I’ve been listening to him since 2013). I can’t choose a song, but I’ll choose the album “Kiss Land.” It helped me a lot in the months I’ve struggled. I hope someday I can go to his concert before I go completely deaf. 🙂
Dream Superpower
I’d choose the ability to read peoples’ minds.
Favorite Food
My favorite food is any food that has shrimp in it!
Fun Fact
A fun fact about me is that I use humor as a coping mechanism, especially for serious situations (like NF2-SWN right now). When they hear me, people ask, “What is she doing?” I mean, somehow, I’ll make fun of my 14 tumors or anything. It’s awkward but funny for me. I joke 24/7 about my situation, which helps a lot, trust me!
