Hi lovely people out there!

I am Rara, a quiet girl from Austria (Europe). My life actually changed, when I just thought my best time is 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 did not stop for months, I got a bit sceptic…

I went from one doctor’s office to the next, but nobody could figure out what was wrong with me. The combination of being in constant pain and not able to talk with anybody really got me feeling… anxious, lost and so 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 the University and just having a good time.

It took quite long until I finally got my diagnosis: What had started trivial, turned out to be a serious Rare Disease called “Eagle-Syndrome” (bones in my throat blocked some important brain nerves). It was a shock, certainly. The cruel thing of having an uncommon illness (0,16% worldwide) is probably that hardly anyone can tell you what to do best.

After trying so 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 into a new one! But sadly, this wasn’t the case. The surgeries only relieved some of my symptoms but also caused severe new ones. I barely could open my mouth, move my head or tongue, barely could 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, 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 manual therapist from the Netherlands, who cared about my case!

Since then, (for 2,5 years now already) this Dutch professor is trying to manage my dysfunction with special treatments – until today. They are really painful because my intraoral scars in the throat/mouth are very hard to cure. In addition, this professor is a busy man who travels a lot. So, I always have to go on “medical journeys” to receive my therapies, which sounds exciting, but is actually more exhausting and expensive (I’ve already flown over 40 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, because my parents simply cannot afford the flights, hotels and treatments abroad all the time. The problem is that I’m still in pain and my voice capacity is limited. Anyway, my aim is to live a “normal” life one day (& maybe also to sing again).

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 without adequate help (I did a scientific study for my diploma thesis).

I started blogging on Instagram about “my journey” with the aim to encourage people to believe in themselves. I’d like to tell all worried people, that they could probably find their own “way to happiness” despite life changing events/ limitations or disabilities. All the healthy people I’d like to tell, that they should not wait until tomorrow to live their dreams. Cause you know: life is short (but great)

You can follow me on Instagram at rara.punzel