My nickname is Arti and I’m 11 years old. Because of my HAE diagnosis, I’ve been suffering from frequent and painful swellings since I was little. My life is divided into healthy days and sick days, and unfortunately they take turns terribly often. But apart from the HAE diagnosis, I also have a great family, enjoyable hobbies, a lot of friends, and hope for a better future. I won’t give up without a fight, and I believe that life with HAE can be better and more joyful than it might seem at first glance.
I like skating, but due to frequent swellings caused by HAE I can’t practice sports as often as I wish. However, I attend synchronized skating classes at a sports club in Prague. I can’t race in competitions, but I still enjoy skating very much, and that’s the most important thing for me: to enjoy my healthy days and gain strength to go on.
I also like music. I either listen to music or sometimes play the piano. When I do something that’s related to music, I can forget about everything around me and immerse myself in the world of music, far from reality.
In addition, I very much enjoy reading. With reading, it works pretty much like it does with music: I completely immerse myself in it and enjoy getting positive energy. I mostly like reading fantasy books because I can forget my own story there for a while and focus on different ones.
I care for my friends and I’m grateful for having them. It happened to me repeatedly that I had to stay home and couldn’t go to school because of HAE swellings. When returning to school, my friends were, of course, asking what had happened to me. And what did I do? It’s best to tell the truth. I don’t like lying, and therefore I behaved accordingly. I told them the truth about my illness. And our friendship has remained just as firm, and the girls hug me when I show up back at school.
I’m not afraid of my disease. HAE is one big obstacle in my life, but every day I’m learning how to deal with it. The important thing is to gradually gain positive energy from what I enjoy in order to remain strong in my never-ending battle with the disease. At the same time, there is hope that new medicine which could improve life with HAE will come to the Czech Republic in the future.
written by Arti
This story is a translation of a Czech patient story from the HAE Junior patient organization.