Eirini Giennakidi, an HAE patient and youngster from Greece recently took part in a VICE interview sharing her experience with the disease and her intake on rare people. Have a look below for the full article!
This interview was part of “VICE Specials” and was aired on Greek TV.
It is a small documentary named “Rare diseases, rare people” and its purpose is to raise awareness on what it’s like to be a patient with a rare disease in Greece. It analyses the impact of the condition and the issues patients face with the health care system and society by following 3 patients with different rare diseases on their day-to-day life.
Written by Eirini Giennakidi
In my interview, I share my long road to diagnosis, when I experienced plenty and frequent attacks. This period may have had a big impact on my socialization as a kid, having in mind that I spent most of my time at the hospital or at home with my pets, but it also made me grow a passion for taking care of animals and lead me to pursue veterinary medicine. In the end, it formed me to be the person I am today.
Next, I explain about how my life changed after diagnosis. “At first, I thought it was completely weird that it could be treated. Growing up like this and being the only thing I knew, I thought that this was just the way my body works.” Later, I describe about the most awakening experience for me in terms of HAE, which was when I first got to meet other youngsters at the HAEi summer camp in Frankfurt. “It was such an incredible experience to meet people just like myself! This was definitely a turning point for me and made me realize that you basically have to take matters in to your own hands, take control of your own life.”
The reporter also noted that people tend to distant themselves from things like this, to treat them as the enemy. In the past, that had been the case for me too. But as for now, I try to take courage from this condition. “You have to accept that it’s a part of you basically. As hard as it can be, because it may cause you pain and frustration, it is still a part of you and you have to use it to your advantage.” My positivity results from progress. The better the access to modern treatment and the more independent you become, it makes you feel powerful. Self-infusion has definitely been an important part on making my life as normal as possible.
All in all, I loved how the documentary informs people that a chronic condition is a complicated matter and it affects many more aspects of your life that people may think of. Moreover, I think it was really important to depict how we, the patients, are multi-dimensional beings that have different ways to cope with everyday struggles and more importantly that everybody has their own story.