Volha Stakhouskaya finds the examples set by the HAE patient associations from other countries very inspiring.
I was born in a small Belarusian town Mozyr on the picturesque banks of the River Pripyat, and now I live in the urban area of Lelchytsy, Gomel region. In my childhood, I was a very agile kid; I loved playing with friends, running, jumping, just having fun. I got my first swellings when I was around 12 years old. At that time neither me, nor my family made an account of this. We did not seek any medical help because those swellings were rare, and usually, they were associated with some injury. I remember one day, I slightly bruised my forehead. My eyes swelled overnight, so the next morning, I just could not open them. On another day, I stumbled over the doorstep and hurt my big toe. My whole foot swelled so much that I could not put on any of my shoes. This made me stay home for several days. At that time I even liked it: I didn’t have to go to school and could watch TV, read books; everyone felt sorry for me and brought me sweets.
Does anyone in your family have HAE?
Yes, my mother also suffered from swellings, but in her case, they appeared more often and quite differently. She was tormented by abdominal pain and vomiting. My mother was suffering from internal edemas, but at the time, we didn’t know this. She received treatment for gastritis and stomach ulcer. Her face also swelled, and several times it became the reason to call an ambulance and take her to the hospital. She had to stay there. Since she worked as a veterinarian, doctors believed she was allergic to antibiotics. I remember our first-aid kit at home; it always contained some antihistamines and diuretics. We thought they really helped because the swellings were gone in two or three days.
September 2009. My dream came true! I entered the Library College in Mogilev. A student now! I recall how happy my family was when my sister and I were packing all we needed there. Then there was that morning of 28 September when everything turned upside down. Mom died. Died of laryngeal edema in the hospital she was urgently taken to by an ambulance. We talked over the phone the night before, everything was fine. The edema started abruptly. It’s way too painful to recall those days. Just in three months, I had my first serious attack. My sister and I were on the night train to Mogilev when my face started swelling. I was so scared, as I realized that something similar happened to my mom. I went to the hospital immediately upon my arrival. I was put into the pulmonary department of the tuberculosis dispensary and treated with antihistamines. Somewhat later, another allergist, upon listening to my story, assumed that it was not an allergy and prescribed me aminocaproic acid.
Apart from you and your mother, does anyone else in your family suffer from HAE?
In February 2010 my dad, my sister, my brother and I passed tests in the Republican Scientific and Practical Center of Pediatric Oncology and Hematology, and the same day we learned that the level of C1-inhibitor in my blood was significantly reduced. The genetic test confirmed my HAE diagnosis. I was lucky to meet a doctor who was familiar with HAE and suspected it. Now doctors in my hometown know about this disease and are always on the alert.
You have a son, Artem. Has he been tested for HAE and if so, what are the results of the test?
When my son was born in 2014, I was very happy to have a baby, but the feeling of anxiety concerning his health did not leave me: “What if he is also sick?” In May 2019, we passed the necessary tests. How anxiously was I waiting for the results! They said Artem is healthy! This was the happiest day of my life.
Do attacks in your experience become more frequent with age?
Yes, now and then I suffer from swellings of my limbs, face and stomach. I spend many family holidays in the hospital because you never know when the swelling will start: like in the morning I might be preparing for New Year’s celebration, and in a few hours there is an ambulance beside my home. I met the new 2019 year in the intensive care ward, just like 2017. That New Year is especially painful to recall for my family and me because that was when my son also got into intensive care. While I was in the hospital receiving infusion therapy, my son spilt hot tea over himself and got serious skin burns. We both were taken to Gomel by the reanimobile and spent almost a month in the hospital. Our relatives worried a lot about us; they were afraid that this stress could make me get worse. Fortunately, it all ended well.
In Belarus, there are no effective drugs for HAE patients which can quickly stop the dangerous swelling. If my face swells, an ambulance takes me to the hospital where I spend 5-7 days until the swelling is completely gone. If my hand swells, I can’t work and do anything about the house for several days.
How did HAE influence your studies?
Studying was really difficult for me. The swellings appeared more and more often. I spent at least one week of every month in the hospital. My college state exams also found me in the hospital, since the stress didn’t add to the reduction of my attack. I’m grateful to my teachers, who perceived my health condition with much understanding and supported me. After graduating from college, I entered the university as an extramural student, but I had to leave my studies. I was afraid of the frequent trips to the city I hardly knew, the inevitable stress of the exam period, new swellings, so I decided not to continue my studies.
Would you say that you feel support and understanding from people around you: your family, relatives and friends?
I am grateful to my family and friends, who are always there for me and ready to help. Their support is really important to me. But sometimes it’s difficult to explain to someone who has never heard of HAE, for example, my co-workers, why I’m unable to work because of edema, and how dangerous the face swelling is.
Are you involved with HAE awareness work?
Currently, I’m not. However, my sister Iryna contributes to the development of HAE patient organization in Belarus. She participated in several conferences related to HAE in Belarus and Poland. She helps to prepare articles on HAE, and together with other active members of the patient association, she tries to ensure that knowledge about HAE is widely spread among medical specialists and that Belarusian patients get access to effective HAE medications as soon as possible.
Have you attended any international HAE conferences?
In 2017 I attended the conference of Belarusian patients in Minsk. It was the first time I saw other people with the same diagnosis, and I was greatly inspired by the speech of the HAE International Vice President Michal Rutkowski.
Such meetings are very useful as they make you feel that you are not alone with your illness; you get a chance to talk to medical specialists and other patients, share your experience. These meetings inspire hope and help us live, teach us to follow the example of patient associations from other countries.
I felt happy for the people who have access to effective drugs that quickly relieve edema. Thanks to this, HAE patients can live, study, work and travel without much trouble and discomfort. I want to believe that Belarusian patients as well will soon have access to such effective medications.