Hi lovely people out there!
I am Nora, a quiet girl from Austria. It’s a real honour for me to tell my story on this platform. I really hope you’d like to read it
My life actually changed just when I thought my best time was yet to come. I was 21, when I sang a little too much at a gospel choir concert and got an inflammation in my throat that affected my voice-box. From one day to the next I felt a severe pain, lost my voice and suddenly wasn’t able to speak anymore. At the beginning I believed it’s just a simple infection, nothing to worry about…but as it continued for months, I started to get a bit sceptic…
I went from one doctor’s office to the next, but nobody could figure out what was wrong with me. Many people with rare diseases might know this process well.
The combination of being in constant pain and not able to talk with anybody really got me feeling anxious, lost, and very different from others. Pain prevented me from doing all the things I once used to do with joy: meeting my friends, singing, dancing, studying at university and just having a good time.
It took a long time, until I finally got my diagnosis. What had started out trivial, turned out to be a painful rare disease called “eagle-syndrome” (long bones in my throat blocked some important brain nerves). It was a shock, certainly. The cruel thing of having an uncommon illness is probably that hardly anyone can tell you what to do for the best. It might be redundant to say that in a dedicated rare disease magazine and platform, but maybe this fact just cannot be highlighted too often.
After trying many unsuccessful healing-methods, I decided to undergo some risky intraoral head/throat surgeries, which I assumed to be my ticket right back into my old life or better still, into a new one!
But sadly this wasn’t the case. The surgeries only relieved some of my symptoms and caused severe new ones. I could barely open my mouth, move my head, neck or tongue, could barely swallow, eat, sleep or make any noise without pain. Not even morphine could take away my pain.
I had a breakdown…
However, having survived such dangerous surgeries and seeing my family caring so much about me, I just couldn’t give up. I told myself that this physical condition was neither meant to reduce my will to live, nor my faith. So I kept going.
Aged 22, trapped in a body that didn’t function at all, unable to talk for more than one year, but still full of super big dreams – I looked for new help again. After a long period of hopelessness, frustrating defeats, and silent communication via pen and paper with my loved ones, I got to know a therapist from the Netherlands, who cared about my case!
For two and a half years now this Dutch professor has been trying to manage my dysfunction. The treatments are really painful because my scars are very hard to cure and cause many problems. In addition, this professor is a busy man who travels a lot for his work. So I always have to go on “medical journeys” to receive my therapies, which is really exhausting and extremely expensive (I’ve already flown over 45 times all around the world).
Aged 25, I still depend on constant treatments that cost a lot of money. I also do replacement therapies in my hometown now, as well as look for new therapeutic methods that heal intraoral scars in the mouth. The problem is that the pain always comes back and my voice capacity is very limited.
I dream of once being able to sing under the shower again without having pain. And I hope so much that I will reach this aim one day.
Although I am not dealing with the rare disease itself anymore, but more with the consequences of the surgeries, I kind of see it as my mission to raise its level of awareness. I know that there are many people out there suffering silently. (I did a scientific study for my diploma thesis. I believe this is the first quantitative study worldwide - two patient groups from five continents took part in it).
I started blogging on Instagram about my journey trying to encourage people to believe in themselves. I want others to know it is possible to find your own way to happiness - despite life changing events/limitations or disabilities.
I’d like to spread the message, that nobody should wait until tomorrow to live his dreams. Cause you know: life is short (but great!)
Written by Nora Punzel
To follow Nora and learn more about her story, follow her on Instagram @Nora_Punzel