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The silver lining of my HAE cloud
Bulgaria: Danail Dimov (HAEA Bulgaria)
HAE colors at the National Palace of Culture in Sofia
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National Palace of Culture in HAE colors
Bulgaria: Tanja Stoeva
Life is beautiful despite everything! I am grateful to my mother for her support and to the physicians for their care.
Croatia: Mihaela Marjanovic Sogoric
This is my treatment
Macedonia: Natasha Angjeleska I took the best of what HAE can be: LOVE my son, love the whole HAE FAMILY, love TRAVELING and making NEW OPPORTUNITIES for me and HAE COMMUNITY in SEE region and wider.
Macedonia: Natasha Jovanovska Popovska The silver lining of my HAE cloud? All the experiences I had, all the people I met, all the trips I took, all the events I organizedâ&#x20AC;ŚBecause of HAE I learned new skills, I learned how to advocate on other peopleâ&#x20AC;&#x2122;s behalf, and for that I had the best teachers I could imagine! However, I learned something else, which is also very important. Throughout my life and especially since the beginning of my advocacy, I learned how to be more compassionate, more empathetic, more understanding of other peopleâ&#x20AC;&#x2122;s hardships. HAE has taught me how to love myself better.
Macedonia: Verche Jovanovska Jankovska When my son got diagnosed, I was devastated, angry, sad...I didnâ&#x20AC;&#x2122;t know that it was the beginning of a journey, not always easy, but full of wonderful people that have become my family. I learned that diagnosis does not form us, but it is up to us and our strength to start fight that will never end. I found out how to be brave, even when Iâ&#x20AC;&#x2122;m weak, to never stop fighting for the future and for better life. HAE taught me how to better understand people with need, how to be a better human.
Macedonia: Klementina Ampovska Hello, I am Klementina and I am 24 years old. I come from a town where nobody had known what was happening to me, they would shrug their shoulders when I had an attack. Then I realized that it is up to me to fight in order to get the diagnosis. Quite by chance one afternoon I was watching TV and there was a report about a rare disease which is manifested with swellings throughout the body. I immediately realized that I had the same symptoms. The next day I asked to see the physician who was on the TV program and when I told her my symptoms, she said “welcome to our HAE family”. Up until that day this disease had been the worst thing in my life, something that made me depressed and shy, something that made me reserved. When I met other members of the HAE family, I realized that all this is just a bad dream, I turned the other page of the story, took my disease by the horns, smiled and continued with new attitude that nothing and nobody can affect my life as long as I don’t let them. HAE, thank you very much
Macedonia: Jasmina Micevska Hello, I am Jasmina and I am 45 years old. I have HAE and for long period I had no idea what was happening and I was frustrated. Whenever I had an attack, I would hide so that people would not notice that I was different than others, rare. Since I got the diagnosis and I became part of the HAE family I am more confident and I know that although we are rare, we are not alone, there are medications and we can have a normal life just like everybody else.
Montenegro: Marija Nikolic
When I got the diagnosis, I didnâ&#x20AC;&#x2122;t know anyone with this problem. Five years later I met a person with HAE. Today I am part of a big HAE family. They are my driving force and power in the struggle for better conditions for HAE patients in our country.
After many years of struggle for diagnosis and accepting the fact that I have a rare illness I felt tired. But after a while I was able to help a patient with HAE which filled me with a wonderful feeling and gave me the strength to give my contribution to raising awareness about this disease.
HAE is just a sign about how special we are. Someone might think, “Oh, well, there could have been better ways for us to see that”. No, this is the right way, as it leads to fight, it tells a story on perseverance and resilience and makes us see the world from another perspective. Be brave! When life gives you something that makes you feel afraid, that’s when life gives you a chance to be brave. HAE Mother of two HAE Sons
Romania: Ana-Maria Baltatescu When I was a child, I remember feeling different than the rest of my friends because of my HAE and I was hiding for days when I had a facial swell so I wouldn’t scare them. It took me years of pain, scary thoughts, worries and fear of the unknown, to realize that being different is not a bad thing. Being different is a blessing hidden in many challenges that are meant to grow you into the person you are supposed to be. Being different is a gift that you should embrace, both in the good and the bad days. Being different might open you the path for one of the greatest experiences of your life. Because of my HAE I chose Medical School. Because of my HAE I became a doctor and I’ve learned the power of healing through kind words. Because of my HAE I’ve met a lot of amazing people who made me feel that I am not alone and gave me courage and support to follow my biggest dreams. Because of HAE I had the chance to train at the HAEA Angioedema Center in San Diego, working with experts in the field and learning that you can be both an amazing physician and a great person. I FEEL BLESSED THAT MY “CLOUD” TURNED OUT TO HAVE SUCH A GREAT SILVER LINING.
Romania: Maria Monalisa Baltatescu
Schonbrunn Palace, Vienna 2018 Story: Vienna was an incredible experience. This was the first time I traveled abroad so it is something I will never forget. The HAE Global Conference was a great opportunity to meet people who are in the same condition I am so every person I talked to I felt like she understands me without saying so many words. On the other side, I had the opportunity to discover an amazing city that won me with its impressive palaces and the joy of the citizens.
Schonbrunn Palace, Me and My Cousin, AnaMaria Baltatescu Story: I want to introduce you to the most supportive and understanding person in the world: my cousin. We had a great connection before I found out I have HAE, but since then we are so close, I could say she is my big sister. I know she is always by my side and whenever I call her no matter what the problem is, she is there for me. I feel like we are speaking the same language because she is a patient too.
A photo of Me and My Parents from high school promotion day, 2016 Story: Whenever I talk about my family, I get emotional because I love them so much. When I found out about my condition my dad was affected the most, but this is something I only know because he has the strength and the power to encourage me and support me. Since then we have a great relationship based on trust and empathy. I can say he is my best friend because I can talk with him about anything. The meaning of the motto is: “Mai multe fete, o singură familie”
Serbia: Biljana Jankovic I’ve been thinking a lot about what would be the positive side of having HAE .... Somehow, the family is the first thing that comes to my mind. Even nine members of my family have HAE. Although we are close, this creates an additional bond between us as it’s getting easier when it’s shared ... It was not until I went to Skopje that I realized how many people are fighting HAE. There I met beautiful women, mothers who showed me how courageous and persistent they are in continuing this fight. I was truly impressed by them. MANY FACES ONE FAMILY The second picture shows part of my family with HAE
Slovenia: Teja Iskra I just do it, the silver lining of my HAE cloud.
Croatia: Sasa Pavlic