When I was about 17 years old, I got tonsillitis and after that my first swelling came up on my right-hand little finger. At the time, I was a high school student and went see the doctor. The surgeon gave me a splint, but he did not recognize the type of swelling. However, during the very same evening, they had to remove it because my other hand started to swell too. In the end, they concluded that it was a "delayed allergic reaction to antibiotics".

After some time, my hand got swollen again, and this time also my face, which was worse. I still remember clearly that an ambulance came twice and on the third occasion they took me to a hospital where I ended up in the ICU. In the hospital, my facial swelling subsided.

When, two months later, another swelling had occurred, a new marathon of medical appointments began always with the same conclusion: diagnosis unknown. I heard various speculations – that I could be pregnant, that I just didn't want to go to school, etc. The doctors didn’t know anymore what to do next, and they told my mom that they couldn’t help me. My arms, legs, shoulders and thighs would swell repeatedly. Only when I really didn't know what to do, with a help from my mom, I got to a specialist at the immunology department in Prague (my GP refused to give me a referral, as, back then, it seemed unnecessary to her). That’s how we finally discovered the name of this mysterious disease – hereditary angioedema. It took 5 years full of suffering.

Soon afterward, however, another problem arose: the only treatment of HAE available at that time were pills that reduced swelling but had harmful side effects. So my teenagehood with HAE continued to be very challenging, despite the correct diagnosis.

At school, the subprincipal informed me that: "For all this slacking off and missed 370 hours, you won't get to the school-leaving exams, even if you repeat the school year twice." He also added sarcastically: "We wanted to collect money for your funeral wreath…" He simply wrote me off, he had no understanding at all about my painful anguish. But in the end, I passed my exams and managed to do it even without an individualized education plan or extra support from teachers.

I wish researchers would find a "miracle pill" ensuring a peaceful life without symptoms for HAE patients. And I would also like youth with HAE not to have to suffer during their adolescence as I did.

Jana H, 35 years old, Nymburk.