Written by Ersan Sevinc (24), Turkey
We had the amazing opportunity to get in touch with one of our dear friends and member of the HAEi Youngsters Community, Ersan Sevinc, and ask him a few questions about his journey with HAE. Ersan has been a very active part of HAE Turkey and has achieved a lot over the past few years, both personally and as a young HAE Advocate. We are extremely happy to share his 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?
My name is Ersan. I’m 24 years old and I am from Istanbul, Turkey. I was diagnosed with HAE Type 1 on 16.05.2014 which is also the international HAE day. However, back then I had no idea about what HAE was or the significance of the day. Since then, HAE has become my passion rather than a burden of life. I became a member of HAE Turkey just after it was established to understand what I’m dealing with.
My first contact with young HAE patients was at the 2016 HAE Global Conference. It was my first international conference, but it was also the first time I met young people who shared my struggles. Up until that point, most of the patients I knew were adults.
I think youngsters will be shaping the future of HAE around the world, which is why it is important we have our voices heard!
I always believed that there is a great difference in the way we experience HAE both physically and psychologically compared to adults. It’s good to know that you have friends who can understand you.
What does living with HAE mean to you? (x2 struggles, x4 blessings)
This might sound a little bit absurd at first but after I got diagnosed, living with HAE has become a blessing for me.
I met the wonderful HAE Turkey team and finally learned that my family and I are not the only people with HAE in the world. I came out of my shell, gained confidence in many areas of life and pushed myself to be helpful for those who might be in need of help.
I traveled abroad to broaden my perspective in terms of HAE and I met with amazing patients all around the world that inspired me and my works for HAE Turkey.
These are my blessings but I also have my struggles. Due to my frequent attacks, I often feel down, however, I always hold my blessing to keep on doing what I do.
What is the biggest HAE-related challenge you have faced and how did you overcome it?
My biggest HAE challenge is my attacks and their effect on my education.
Since I started to have attacks, I lost many days from school like many HAE patients, and those were the most important days where I had exams, etc. That’s why I couldn’t be one of the best students but at least managed to keep the average. Despite having attacks, I succeeded in graduating from university without a gap year and have luckily started to work on my career.
One of my other challenges with HAE, and a night I won’t forget was when I almost had an operation because of a misdiagnosis. I had a severe abdominal attack and it was a nightmare because I had no idea what was happening and neither did the people at the ER.
Thankfully, there was a physician who thought I might have something “bizarre” and advised against an operation, as they didn’t know what they could be faced with.
In that night, I wasn’t operated, but I wasn’t treated properly too. All they could do was just injecting strong pain killers to reduce my pain and try to understand the reason behind my pain.
Who supported you during the challenges you faced and how did they help you achieve your goals?
I was lucky to have other patients in my family who could understand what I felt and try to ease my burden as much as they could. In addition to my family, my beloved friends have always been a great support system for me. They have always helped and taken care of me when I needed it during every moment of my attacks.
When I left the “nest” for university, it wasn’t easy at all! I was living alone, and everything was out of my comfort zone, which in itself meant many triggers for HAE attacks.
I was having an attack almost every day and sometimes I had to rush to the ER because of the pain or simply because I was out of my shots.
I am grateful for my closest friends, who were always just a phone call away and had a key to my place to save me in those moments when I needed help the most.
How has overcoming the challenge changed your outlook on life with HAE?
Nothing is impossible, as long as you have the right medications. The key to living a fulfilled life with HAE is simply having access to treatment! If you have medications and can inject yourself, there is nothing to be afraid of in life.
What is the most rewarding part of speaking for HAE patients? and is there a special memory/story you would like to share?
After spending so many hours on articles, websites, and contacts, you learn a lot about HAE, but you also realize that many of the patients are not into learning themselves, at least, not at that level.
Teaching and training people became one of the rewards of my extensive HAE learning. Constantly improving myself makes me content in every field of my life including HAE. Being able to transfer this information to other people and watch them as they improve and get eager to know more is my goal and reward.
I’m the youngest member of the HAE Turkey team and I’m responsible for international communications, following the international updates and managing the social media & website. This role gives me the opportunity to compare the management of HAE and available treatments in different countries and speak about it in front of policy decision-makers and HAE patients at events. Giving presentations about all these with concrete references make people listen to you regardless of your age and you influence the improvement for yourself and all the HAE community.
Have you ever experienced a negative response from someone regarding HAE and how did you handle it?
The answer to this question might vary from person to person. However, I’ve never experienced a negative response towards me, at least I’ve never heard anything that upset me.
However, I do sometimes find a few questions irritating;
Will this disease pass to your child?
Will you have a child?
Isn’t there any permanent treatment?
Do you have any advice for other Youngsters who are facing challenges or want to help the HAE community?
For those who face challenges, be independent and stay positive regardless of what comes your way.
For those who want to help the HAE community, be a real part of it, there is always a way to collaborate and bring your charisma and personality into what you do for the community.
What is your message for the HAE Youngster’s Community?
Communication is essential in developing our community within our own countries as well as internationally. There are endless ways to get in touch with all the HAE Youngsters and other HAE patients. Don’t be afraid to ask questions or get in contact with anyone. Just say “Hello” and a “:)” is enough to start everything off.
What do you hope to see in the future for the HAEi Youngsters’ Community?
I hope to see increased engagement among HAE Youngsters in the following years. Additionally, I do believe that all youngsters should really take an active role in their patient groups or association. They can inspire adults and learn a lot about how to improve the status of HAE in their own countries.