We are very pleased to share with you Dejan’s story. Dejan is from North Macedonia and is an HAE patient. His story “I want to be like the others” was recently published in a book titles “One day in my life” . This book is a collection of stories from people living with different conditions who make a choice every day to live life to the fullest. Dejan shared with us that he was very excited to share his story as part of this book, with the hopes that it will inspire and help other youngsters living with HAE.
You can read Dejan’s story below.
I am Dejan Angjeleski and I am a high school student. I will turn 18 in a few months and look forward to officially becoming an adult and being able to apply for my driver’s license.
I have lots of friends, but most of them are not from my school. The reason for this is that my schoolmates do not understand why I am absent from school so often. They think that I am spoiled and that I pretend to be ill. And I find it awkward to explain and prove that I am really sick when I look “healthy” outwards. In addition to HAE, I also have celiac disease which means I am gluten intolerant. So, when I was in elementary school my friends also could not understand why I could not eat muffins, pretzels and other pastries. Nowadays, when I go out with my friends, being gluten intolerant means I cannot buy sandwiches, pastries or pizzas from sandwich shops because in my country we do not have any bakeries making food with gluten-free flour. Although all of this annoys me, I try not to show it so I can still go out and hang out with my friends. Once I even went out for several hours and I just walked with my friends through various places in my neighbourhood. As we walked my leg started to swell and although I knew it was swollen, I did not want to stop hanging out as it was really fun. So, I was patient and tried not to limp while walking, However, when I got home, my mother had to prepare an injection after midnight and infuse me.
I do not want people to see me as a “child with HAE” as I want to be like everyone else. I do not think I am very different: I like to hang out, go out, go to concerts and go for walks in the park and Vodno. Most of all I want to go to Ohrid where my grandparents live, especially in summer. In summertime Ohrid is much livelier and there are many youngsters and good parties. I also like to travel and so far, I have been on vacations with my parents but also at a camp with young people who also have HAE. I also went to Frankfurt where I met about 50 young people from all over the world with HAE. They had similar concerns to mine and the same as me they did not want to be seen as different or less valuable to be friends with. What I liked most during this trip was that I saw young people with HAE traveling around the world and trying to prove themselves in various activities. Some made movies, others played instruments, enrolled in college and many other things. I somehow doubted whether I would be able to travel and continue my education, or start working somewhere, all because I have HAE, but I decided to give it a try.
So far, I have worked at my father’s clothing store with his supervision. Last year during one weekend I applied to do a different job. A shop owner was looking for someone to dismantle a store in Karposh. So, the manager called me because he wanted to give young people a chance to earn wages for themselves. Even my mother could not believe that I would be able to work 7-8 hours physical work. The job was to remove the tiles and then clean the garbage. When I got home I was drenched in dust, so I just took a shower and fell asleep. When I woke up, my muscles and arms ached, but I was satisfied that I did not give up and I earned my living honestly. It was not an easy job, but I was satisfied that I worked hard, I earned my pocket money and then I went out with my friends for a drink.
It worries me that there is no cure for HAE. However, there are some new therapies that medical scientists are trying to approve currently in the form of tablets. Therefore, I think it will be easier to live with HAE if you do not have to have an injection during an attack but just take tablets. I want to believe that by the time I finish high school, I am now in my third year, the tablets treating HAE will be approved, and then I will decide what I would do and whether I would be able travel independently.