HAE patients from all over the world let you in on their stories
The HAE patients telling their stories below are born or living in Argentina, Australia, Belarus, Brazil, Costa Rica, Cuba, Denmark, Hungary, India, Israel, Japan, Kenya, Lebanon, North Macedonia, Norway, Panama, Poland, Russia, the United Arab Emirates, the United Kingdom, and the United States of America.
Meet the university lecturer, the truck driver, the retired nurse, the operations manager, the businesswoman, the cattle farmer, the architect, the student, the nursery teacher, and many more.
Pravalika Meduthuri, India (1995)
After trying multiple medications and finding the one that works for her, Pravalika Meduthuri from India started doing all the things she love. She has a lot of hobbies now, and like the fact that she's able to keep up with her activities as things are nowadays.
Zoltan Maros, Hungary (1982)
According to Zoltan Maros from Hungary, we often get comfortable when we get used to the support and things we got now, but it is not guaranteed. We must work to keep maintaining these conditions.
Michelle V. Coronado, Panama (1991)
Michelle V. Coronado most of all want to obtain the appropriate medications for HAE patients in Panama to have a good quality of life and more people to know about the disease.
Cecilia Ramirez, Argentina (1966)
Before she was diagnosed, Cecilia Ramirez went to all kinds of workshops, looking for a cure. She sees now that she was searching for answers that may not have had a question.
Emily Wheeler, Australia (1998)
Once she was diagnosed with HAE, Emily Wheeler felt very relieved that she had answers – and access to modern treatment.
Angie Dayan Leitón Chacón, Costa Rica (1994)
Having a solid contact with HAE International via the Regional Patient Advocate has made things easier for Angie Dayan Leitón Chacón. For sure, it is not the same to work alone for HAE patients and to have the support and presence as an international organization with the proper resources and global experience.
Rosa María Perez González, Cuba (1969)
Rosa María’s concern turned into active involvement – she has educated her friends, coworkers and family and shared information with doctors and nurses close to her family.
Noah Davis-Logan, United States (2004)
Noah Davis-Logan wishes to use his influence to raise awareness on HAE and to make the world a better place – not least for HAE patients around the globe.
Volha Stakhouskaya, Belarus (1990)
Volha Stakhouskaya finds the examples set by the HAE patient associations from other countries very inspiring.
Dejan Angeleski, North Macedonia (2002)
Dejan Angeleski says that having an HAE patient organization like the one in his home country is very helpful as it can raise awareness, advocate, and lobby for patient rights.
Tad Rockwell, United States (1968)
Tad Rockwell says that getting the right medication has changed everything. "Today I handle my disease, and I am not a victim of HAE anymore."
Yujin Yamamoto, Japan (1996)
"By drawing upon our inner strength and accepting support from families, expert doctors, and HAE advocates the lessons we learn from having HAE can empower us to achieve whatever we strive for in our lives", says Yujin Yamamoto.
Patricia Karani, Kenya (1981)
Patricia Karani will not only fight for her own life but the life of a child, a parent, a mother, a father or a friend who has lost hope.
Dana Shapiro, United States/United Kingdom (1986)
Dana Shapiro used her fears about HAE as motivation and to build resilience and confidence to climb Africa's highest mountain, Mount Kilimanjaro.
Michal Rutkowski, Poland (1980)
When he was a teenager, basketball meant almost everything to Michal Rutkowski. He spent hours practicing and game time was the most important of the week. It happened often that during that particular day he had an HAE attack, but somehow he was able to convince the body to pause with the edema, at least during game time.
Lois Perry, United States (1958)
Lois Perry can now live without worrying about choking to death like her father. She can mow the lawn, trim trees, type, and even sit on bleachers – without swelling. Or if she does, she can self-infuse and within an hour be back to living again.
Raquel de Oliveira Martins, Brazil (1945)
Raquel de Oliveira Martins overcame her rare disease and founded an association of patients in order to spread information to doctors and the general public.
Bosmat Friedenreich-Wertzberger, Israel (1974)
Bosmat Friedenreich-Wertzberger is a career woman, presently in a very intensive senior managerial position with 12-hour workdays and 24-7 availability. It is challenging but she loves the action – and since she started to self-inject her life has changed dramatically.
Benedikte Hellevik, Norway (1974-2016)
Benedikte Hellevik has only months left to live. So how on earth can she talk about the joy of living? Well, for her it’s more important than ever. Life isn’t over yet, and she is going to enjoy every second of it.
Viktar Lebedz, Belarus/United States (1979)
Viktar Lebedz has been suffering from and trying to understand HAE for over 25 years of his life. During this period he has had many sudden swellings, unnecessary treatments and even surgery.
Erling Hess-Nielsen, Denmark (1940-2016)
“I have really been lucky all the way through, you know”. That is how Erling Hess-Nielsen, born 1940, summarizes his life – despite numerous hospitalizations and frustrating, incriminating malpractice
Rachel Annals, United Kingdom (1978)
Rachel Annals thought she was quite alone with her disease - but when she was diagnosed at the age of 15 it turned out that her father, as well as her grandmother and her great-grandmother, also suffered from HAE.
Arianna Kitzinger, Hungary (1964)
After a childhood full of mysteriousness and misery, Arianna Kitzinger now leads a relatively serene life with manageable HAE attacks. For a long time, she did not know how to face or handle her condition but fortunately met the right doctor just as she was on the verge of giving up hope. “It’s never too late”, she confirms when recalling the memories of a rare life with a rare disease.
Ann Price, United Kingdom (1944)
The story of HAE in the family of Ann Price started with much ignorance, fear, pain, and mismanagement, but now she and her HAE relatives have confidence and enough control over the situation to live full and active lives.
Ole V. Kristensen, Denmark (1964)
When he was younger there were many a day where Ole V. Kristensen wished that he were dead – if not for his own sake then for that of his family. He doesn’t think like that any longer. Today the right medication ensures him a life that is in every aspect worth living.
Rashad Matraji, Lebanon/United Arab Emirates (1984)
Rashad Matraji has been a scout since his teens and he has tried things like hiking, camping, cycling, exploring caves, kickboxing, and kungfu. Never has he asked for special treatment - nor has he acted as if he was in any way disabled or having a problem.
Cindy Hughes, Australia (1980)
Living on a farm six hours by car away from any major hospital is maybe not the sort of thing you would do if you were an HAE patient. Cindy Hughes is – and she does. “A country girl born and bred, I wouldn’t survive in the city”, she says.
Rada Buhtiyarova, Russia (1991)
Although she was diagnosed with a very rare condition at the age of three, it wasn’t until recently Rada Buhtiyarova found out that she is not the only person suffering from HAE.
Renata Martins, Brazil (1980)
Renata Martins doesn’t want to be judged by anyone just on the account of having a rare disease as such. She doesn’t consider herself better or worse than anyone – and certainly not due to her medical condition
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