When I was six years old, I was diagnosed with hereditary angioedema (HAE). Since then, I’ve experienced many swellings – most often of the abdomen, hands, feet, or face. Some were so severe that I had to go to the hospital, where I was given intravenous therapy. Getting used to frequent injections and the sight of needles was difficult for me. The fear of attacks and of injections accompanied me throughout my childhood and teenage years.

When I was sixteen, I learned about a clinical trial study that was testing a new form of on-demand treatment – no injections, but oral administration. I found it very interesting, so I decided to join. It was a chance to try something new and possibly change the way I manage my condition. But I couldn’t have done it without the support of my parents – they were the ones who encouraged me in my decision and accompanied me to every visit at the study center. The trips weren’t always easy; they often meant early mornings or coming home late at night. But thanks to their help and patience, I was able to go through the whole process.

The study itself lasted about two years. It wasn’t always easy – the travel for check-ups, filling out questionnaires, following the rules. But the entire study team approached everything very professionally and kindly.

The biggest change I felt was in my daily life. Being able to manage an attack more easily, without the stress of injections, was a huge relief. For the first time in many years, I felt like I was in control. And not only that – participating in the study helped me grow up. I learned to be more responsible, careful, and interested in my own health.

Looking back today, I see that experience as an important step forward. It wasn’t just about testing a new treatment – it was also about overcoming my fear and realizing that I can handle more than I thought. Taking part in the study truly helped me – not only in managing my HAE, but also in how I see myself. I learned to trust my body more, to talk about my needs, and not to be afraid to explore new paths.

As a teenager living with HAE, it was an incredible experience that helped me move forward both healthwise and personally. I hope my story can give courage to other young people facing similar dilemmas. Every step forward, even a small one, matters.

Milan, 19 years old