My name is Kamila, I’m from Trujillo-Peru.
Q: What was your first involvement with the HAE Youngsters’ Community and why is the community important to you?
K: It is important to me because I could feel that it creates an incredible welcoming environment, it’s great that it’s a space dedicated to the experiences of young people, thanks to the youngsters’ community these experiences can reach any part of the world and resonate, creating bonds in the younger generation with HAE, it’s amazing!
Q: How did you hear about the HAEi Youngsters Community and why did you decide to join it?
K: I first heard about the HAEi Youngsters’ Community through Carla (HAE Peru’s President), she encouraged me to participate in the Leap project, so when I was preparing my project I discovered more about the youngsters team and some weeks later I could meet and talk with Nevena, She told me more about the youngsters community and I decided to join the advisory team because I felt very inspired by the stories of the other members, I could recognize that it was something that I also wanted to do and learn from them, as part of the Spanish-speaking community I would like to be able to help young people who cannot communicate well in English.
Q: What is something interesting about you that will surprise us?
K: One of my favorite hobbies is dancing! In Peru we have many typical dances and when I was in school, I liked to learn them so at the same time I could learn about their history, and today I like to dance many kinds of dance, because of that music and art became one of my favourite things! because they taught me to pay close attention! Now I think that most of the things in life are like a meticulous musical composition or a splendid and detailed painting. I also feel that it helped me a lot to appreciate the culture of my country, so I also like to learn about other cultures, I like meeting people and listening to them, I really value the time I spend with them!
Q: How are you involved in HAE advocacy in your country?
K: I had the opportunity to learn many things from Carla, she helped me a lot to be able to organize my ideas to be able to put them together and thus be able to expose them, for example I had the opportunity to present the idea of an informative diffusion project about the screening campaigns that the organization of my country offers.
Q: Is there a special memory/story you would like to share?
K: I would like to share the story of my mother and my brother when they met the representatives of the organization of our country, Carla and Claudia, they were very kind and we were moved by the concern they had to help my brother, and thanks to their support we were able to find out where and how we could investigate my brother’s HAE, our gratitude to them is infinite!
Q: Why is this work important for you?
K: Because as a family member, I know how difficult it seems to be able to lead a peaceful life with HAE but just as my family and I were able to learn how to help my brother, I want to be able to provide that same feeling of support, it is important for me because I learned that HAE is not a disease that should be treated alone, it requires the support of more people, and I want to be one of them.
Q: What is your hope for the future of HAE patients in your country and globally?
K: I hope that in the not-too-distant future the Ministry of Health of my country approves the medication to treat HAE and that patients in my country can receive government support, because the medication is only available through private medical insurance, and most families (including ours) cannot afford that type of health insurance. Globally I hope that the HAE connections grow more and more, that we can speak more languages and expand this incredible community full of wonderful patients and families! Let’s go for it! 😊
Tell us something FUN!
Q: If you could eat only one thing for the rest of your life, what would it be?
K: If I could only eat one thing for the rest of my life it would be potato! It is a very versatile food and you can eat it in several ways! For example, you can eat them boiled, fried, baked, or as mashed potatoes… Also, here in Peru, the potato is present in almost all of our typical dishes. I love potatoes!
Q: Tell us 3 fun facts about your country that will surprise us.
J: 1) The ancestral city of Machu Picchu is considered the “navel of the world”.
2) 87% of the world population of alpacas is found in Peru.
3) We have our own soda, called “Inka cola”.