A diagnosis that changed everything

If you are reading this, you probably found yourself here for a reason. Maybe you are living with a rare disease yourself, or you have just been diagnosed. Maybe you are a relative who is trying to stay strong while still having questions inside.

This blog is for you.

My story is about living with NF2. How my life changed overnight, how I learned to hold on again, and how I find hope even in the most difficult moments.

It's not an easy path, but I'm sharing it with you so you don't feel alone.

The first signs and the moment of diagnosis

I was a healthy young woman who found herself - and her passion - in hospitality.

I worked in several well-known hotels in Austria, then moved to Budapest in 2024 and ended up in one of the most well-known five-star hotels. I had bosses who helped me believe that there was more in me than I thought.

However, in February 2025, my left hearing almost completely disappeared overnight. A constant whistling and buzzing appeared, which immediately changed my everyday life...

A long, uncertain journey followed. I went from doctor to doctor, searching for answers.

In October, the MRI finally revealed the two large tumors in my inner ear.

That was when I first heard the name NF2, but I didn't really understand what it meant for my life.

The difficult words that changed everything

After a short time, a doctor looked at me and said only this:

What broke is still holding. Thoughts on a life that didn’t become easier — just new.

“Little lady, learn the lip-reading.”

This sentence was not an explanation. It was not a help. It was a sentence that closed a future. There, on that trip home, I understood that NF2 can also mean hearing loss, and over time, it can even lead to complete deafness.

This thought almost broke me. I didn't want to give up my life because I wanted to die, but because I didn't see how I could continue living like this.

How I experienced the diagnosis and the changes

NF2 is not just a medical term for me. It is a lifestyle change, a new challenge that I have to learn to manage. In addition to hearing loss, the constant uncertainty, treatments, waiting, and emotional burden have also become part of my everyday life.

The most important thing was to find my own strength – and hope. It’s not always easy, but it’s part of the fight. I couldn’t have moved forward without the support of my family and friends.

Why was this blog born?

It is hard to find personal stories about NF2. This blog was created to give a hand to those who are in a similar situation. For me, it is also a diary that helps me survive, remember and move on.

If all you take with you from this is that you are not alone, it will be worth for me to go on writing.

Tips and advice for people living with NF2 and their families

• Seek support – and don't be ashamed if you need it.

  Living with NF2 is not a burden you should carry alone. There may be few people around you who understand exactly what you are going through, but there are people – peers, communities, professionals – who do. A conversation, a message, or even just reading a story can be a source of support. Support is not a sign of weakness, it is proof that you take yourself seriously.

• Learn to adapt, at your own pace.

  Hearing loss, uncertainty, and change are often scary. It's important to know that you don't have to solve everything right away. There are technical tools, methods, and new forms of communication – but it's okay if it takes time to accept them. Adapting is not giving up, but learning a new kind of strength.

• Pay attention to your health – both in body and soul.

  NF2 is not just about medical tests and treatments. Your mental balance is just as important. There will be days when you feel strong and days when you feel tired. Both are okay. Regular check-ups, adequate rest, and genuine self-care will keep you going in the long run.

• Give yourself time.

  Dealing with a diagnosis doesn’t happen overnight. Grief, anger, fear, and then acceptance often follow one another. It’s not a linear process. You don’t have to “be okay” just because others expect you to be. Your feelings are valid, and you move at your own pace.

• Share your story – when you are ready.

  Spoken words have healing power. It can be written, spoken, or even a quiet sharing with someone who is listening. Your story matters. Not only does it help you organize your feelings, it can also give others hope: that it is possible to continue living, feeling, and loving – even when you are sick.

New directions in life and hope

NF2 does not mean that life ends. On the contrary, new paths open up that perhaps were not visible before. You may have to live differently, but the goal remains the same: to find happiness and purpose in life.

My story is not over yet. Every day is a new opportunity to be stronger, to learn, and to hope.