Written by Sofija Popovic (22), Serbia
Following the Power Of One series we started last year, we are now opening 2020 with another great story from our friend Sofija! Sofija is currently living in France, where she is doing her Masters in Bioinformatics. We are extremely happy to share her story with you, so follow along in the lines below!
Please tell us a little about yourself; where you are from, what was your first involvement with the HAE Youngsters’ Community and why is the community important to you?
Hi, I’m Sofija! I am from Serbia, but I am currently living in France. I first attended the HAEi Youngsters Camp in 2017 in Frankfurt. It was the first time I got the chance to meet a lot of HAE patients who were my age and also the first time that I got to talk about my struggles and realize that I was not alone! It was also then that I realized that no matter where these youngsters came from, connecting with them was so easy because we shared this big part of our lives – HAE. Since then I have been able to witness the creation of the HAEi youngsters committee, the community getting bigger and stronger and it is great to see the youngsters actively participating in advocacy and sharing awareness of HAE.
What does living with HAE mean to you? (x2 struggles, x4 blessings)
Although living with HAE is difficult, it is thanks to HAE that I first got interested in biology and the reason why my body was swelling up. Since then I also got fascinated by other domains of Biology which led to me graduating in Biology this year and now doing my Masters degree in Bioinformatics. It is also because of HAE that I have been able to make friends from all the world who understand me and who are there to support me whenever an HAE-related problem comes up.
What is the biggest HAE-related challenge you have faced and how did you overcome it?
My biggest HAE-related challenge was when I moved away from my family for university. It was a very stressful period of my life because I was, for the first time in my life, away from my family and friends. Until then my dad had been my biggest support through HAE attacks and struggles, as he is a patient himself.
In the beginning it was very hard without him being there to calm me down and help me get through the attack, but I soon learned how to do it myself. What also helped me was finding a new HAE specialist in the city where I moved to, finding the HAE SOS-line, and knowing that no matter what happened or how bad the attack got there would always be someone who could help me.
Who supported you during the challenges you faced and how did they help you achieve your goals?
My family has never let me have a negative outlook on the disease or attacks, and was there to support me through every attack that I’ve had. It is thanks to them that I have not let HAE stop me from going after what I wanted.
I would also like to point out how important it was for me to get the right medications. I have spent most of my youth living without HAE medications, as they were not available in my country for a long time, but after we got access to them my life has become much easier.
I no longer had to be scared of traveling, doing sports or just being stressed out because of an exam coming up because I knew that at any given moment I could use my meds and the attack would go away.
How has overcoming the challenge changed your outlook on life with HAE?
Overcoming this challenge has made me feel powerful and it made me realize that although I am not in control over my attacks at least I can be in control of how I act when I get them. Having my medications makes me feel powerful and fearless, and it makes life with HAE so much easier.
What is the most rewarding part of speaking for HAE patients? And is there a special memory/story you would like to share?
I think the most rewarding part is seeing them realize that they are capable of doing whatever they want and that HAE shouldn’t stop them from chasing their dreams.
Have you ever experienced a negative response from someone regarding HAE and how did you handle it?
No, I have never experienced a negative response from anyone. People are usually simply interested and want to find out more about the disease and how I live with it.
Do you have any advice for other Youngsters who are facing challenges or want to help the HAE community?
For those that are facing challenges, my advice is: just be open about it. Talk about your struggles with your family, friends or other youngsters. If it ever feels like your friends cannot understand your HAE-related struggles you can always contact people from the youngsters community. Don’t hesitate to ask your HAE friends for advice or help. We’ve all been through it and are more than happy to help! If you want to help the community, just contact the HAEi committee and I’m sure there will be a way for you to help. New perspectives and ideas are always welcome, and having more youngsters participating makes the community even stronger and our voices heard!
What is your message for the HAE Youngster’s Community?
Seeing so many of us unite over the same issues and ideas since the first Youngsters Camp in 2017 is amazing and it makes me feel good and proud because I am part of this community too. From creating the youngsters committee, seeing the first youngsters’ website go up to the biggest youngsters advocacy workshop in the history of HAEi and HAEA, I only get more amazed by seeing what this community is capable of and how far we have come.
What do you hope to see in the future for the HAEi Youngsters’ Community?
I hope to see the community grow, more youngsters get engaged and even more things get achieved.