I do not quite recall when my first HAE attack was since the condition has been part of me for as long as I can remember. My mom always says it started very early, even at the age of two when I had swellings on different parts of my body: feet, palms, hands, arms, cheeks, and so on.
What is your own first memory of an HAE attack?
When I was six years old my parents and I went to the small and very beautiful mountain town Krusevo in order for me to learn skiing. We arrived in the afternoon and immediately went to the skiing slope to arrange for me to have my first lessons. It was such fun and joy. There was a lot of snow, and it was a shiny sunny day. I did not stop being active for a single minute, and my mom was getting a bit worried as I did not even want to take a break to have a snack or a hot drink. I was determined to learn how to ski! During that night and early in the morning of the next day I was not feeling that well. The area around my left eye was swollen, and my parents decided to go to the Emergency Unit at a nearby hospital. Unfortunately, they had no idea what was wrong with me and just said that it was probably an allergic reaction from the sun. My parents did not want to risk giving me allergy medications so we rushed back to Skopje so I could get to the Clinical Hospital. During the ride home, both of my eyes swelled so much that I could not see anything by the time we arrived. At that point, I realized that my mom was already familiar with my condition as I heard her discuss with a senior doctor trying to figure out why my symptoms had started so early.
A turning point of your life I guess?
Yes, it became quite an ordeal of constant and long hospitalizations. Most of the time my face was swollen so much that I experienced difficulties in seeing and even breathing. I had abdominal attacks very frequently, and those were the worst as I was unable to get out of bed because I had lost too much liquid and I was in pain. I used to be in a hospital bed for hours on and receiving many plasma packages to make me better.
In the first two years of primary school, I was barely there, and I had to go to a specialist school to work with special educators and psychologists to catch up with the curriculum.
However, even when my mom and I were very disheartened, we made a firm decision not to weep and wail and feel sorry for ourselves. I needed to do something to let go of the frustrations I had, so I enrolled in a basketball club. I was attending training three times a week, and in between the training I played tennis with my mom and grandma and I cycled along the river Vardar and the Ohrid Lake. I was especially happy during the summer holidays because I enjoy swimming and I’m lucky enough that my grandparents live in a beautiful town by the lake. We would go to the beach early in the morning and late afternoon and enjoy the clear water. I also like diving and all water activities. We have visited many waterparks during our holidays, and I always try multi slides, simvoli slides, family rafting slides, and even looping rockets! When we are tired, we have cold drinks and relax.
Well, it has not always been ideal, to say the least. After all, I have been in situations for instance in a foreign country where a hospital was the only place we could seek medical assistance when I had an attack. Even when I was able to bring my own HAE medication, the hospitals would charge a lot for giving it to me, and that meant we had to reduce a couple of days from our holiday whenever I had to go to a hospital outside my home country.
Talk a bit about your HAE medication.
At a point, my mom decided to learn how to give me injections so we could be more independent when traveling. She was terrified at first, and I could see in her eyes that she hated needles as well as hospitals and was very frustrated. However, I knew she would do anything to make my life – our lives – easier, so she completed a course with the nice nurses at the Children’s Hospital in Skopje. Mom is not aware of this, but she is now much better than the professionals when she injects me – I can tell the difference. This dramatically changed our lives.
Our HAE patient organization has managed to win over the medical regulators, and we are now allowed to have home treatment, which makes life much easier. Whenever I have an attack, when I feel the first symptoms, my mom prepares the injection, and I have my medication at home. It is such a relief not to have to rush to the hospital and wait for an hour or two for all the administrative work to be completed before the nurses can give me the medicine. At home, the whole procedure takes 30 minutes, and after that, I can go to school, go out with my friends, or just rest at home, play on my computer and relax. Now I feel freedom!
Your mother has been involved in the national HAE organization since it was established. How would you describe the value of such an organization?
Having an HAE patient organization as we have in my country is very helpful as it can raise awareness, advocate, and lobby for patient rights. I was particularly glad when HAE Macedonia organized a screening of the HAE documentary “Special Blood” in Skopje. My mom invited my teachers to come, and I was pleased that the film could help me explain the facts of HAE to them – based on more than my personal experiences, I mean. Indeed, afterwards my teachers and school administrators understood me much better and became more supportive – and I was able to finish my primary education with fewer worries and difficulties.
You have been sharing your HAE story before?
Yes, the first time I decided to tell my personal story I gave an interview with a young journalist working for a student and youth radio as well as a web page. They also filmed the interview for social media, and it ended up being among the top 10 most viewed videos in the country in 2016. I was happy because I tried to express myself about the challenges and things that interest me most. I was even filmed during one of the training sessions in my jiu-jitsu club.
You were among the participants in the HAEi Youngsters Summer Camp in Frankfurt, Germany in 2017. What did you think about that gathering?
I met many HAE patients and their siblings and friends from all over the world. It was an amazing experience to fell free and discuss things that bother you and not care if someone would be surprised when you talked about needles and injections, pain and fear. We were all the same at the camp, although with so many different backgrounds and interests. I realized that many teenage HAE patients from around the world are experiencing similar things as I am. I was glad to hear that they travel, do sports, and go to college without any constraint because of their condition.
Speaking of education: What are your plans for the future?
I have two more years before I finish my secondary education, so it is a bit early for me to plan for my university studies. Initially, I was into computer programming, but now I am not quite sure what I will choose as my professional carrier. I am currently studying law, and it might be useful for me since I am attracted by the topics that I study covering human rights. The right to health care and support is a universal human right. Therefore, I can maybe choose to become a human rights advocate and contribute to improving the rights of HAE patients in and outside my country. Until I decide what my profession will be, I intend to enjoy life, be active and happy.
How do you see your future with relation to HAE?
I now feel more confident that I can become more independent. I am informed about the latest treatment options. Preventative therapies seem to have good results, and I strongly believe that by the time I start living on my own I can rely on those, so my quality of life can improve without frequent attacks. Even this year I feel I have more control of my condition as I have fewer swellings. It is because I feel less stressed now that I have my medication at home and because we have improved access to therapy in my country.
I would describe myself as a very active and attractive young man – ha-ha! Indeed, I think that I live my life to the fullest and I want to enjoy every minute of it in the company of my friends and family.