Since I was a child, I have been suffering from very painful swellings that appear all over my body. One day my arm swells painfully, and the next day my abdomen. I remember spending my childhood mostly in bed, where the pain kept me. Not wanting to talk to anyone, not wanting to eat and with no energy for everyday life. It wasn't until I moved to the Czech Republic due to war in my homeland Ukraine that my life changed for the better.
My family and I come from the Transcarpathian region in Ukraine. I grew up in a small town near the mountains and we used to make regular trips there. My mother often stayed at home though as she was tied down by swellings. Painful swellings. Face, abdomen, hands. No one knew what it was. Why they arise, what causes them. The doctors could not find any explanation either. When the swellings started to appear in me too, my mother and I would suffer together.
When I had a stomach ache, I would crawl into my bed, throw up and then faint as a result. The pain was excruciating. I usually spent three days like that alone and in silence. I didn't want to talk to anyone, I didn't care about anything except for the pain to go away. No one was able to help us, to find the right diagnosis or to suggest appropriate treatment. At the clinic where I used to go, I was misdiagnosed with Moore's syndrome, and for 5 years, unnecessarily, I took epilepsy medication. But they had no effect on my swellings.
Over the years, I learned to deal with my condition, graduated in psychology and law, found a great husband and had two beautiful boys. I adjusted my diet, sleep and my whole lifestyle to my illness.
When the war broke out in Ukraine in 2022, my family and I decided to leave and move to the Czech Republic. It was not an easy decision, as most of my extended family stayed. We settled down in the town of Kadaň, where my husband got a job and I started supporting my compatriots as a lawyer and psychologist.
The swellings didn't stop even in the Czech Republic. Right after moving to Kadaň, I started to swell in my face and neck. It scared me and I had to be hospitalised in the local hospital. The results of my examination were reviewed by the allergologists, who had already forwarded the information to the HAE centre of expertise in Motol University Hospital, Prague.
Bingo!
Doctor Sobotková, from the Department of Immunology, explained everything to me and set up the appropriate treatment. I was shocked to find out that my swelling had a name... Hereditary angioedema.
At this time, I was introduced to the HAE Junior patient organisation, which helped me a lot. It was a very pleasant surprise to me to see not only that HAE Junior exists, but mainly what great support they offer to their members. I was not used to such support in Ukraine. Thanks to HAE Junior I have learned a lot of information about HAE, got useful tips on managing the disease and my son even received a scholarship for his sports activities. I have attended an international conference for patient organisations where I had the opportunity to speak with the HAE representative for Ukraine and discuss how I could help my family who stayed in Ukraine. The main thing was, however, that I was able to share my story with other families who are in the same circumstances. This has turned out to be a unique and irreplaceable experience for me. This year, my whole family and I are going on an educational trip to meet other families. We are all very much looking forward to it!
I have been on prophylactic treatment since October 2023 without any swelling. It has completely changed my life. I can now devote myself fully and without restrictions to life. I have liberated myself from the fear that I might get a swollen neck and find myself in a life-threatening situation. That's exactly what happened to my mother, who died from swelling in her neck at the age of 53.
Unfortunately, I am living with another fear. I don't want my son to suffer the same pain I did. Fortunately, I know there is treatment available. At least now I know what we live with, what we face. And how to help ourselves.
When I was leaving Ukraine, I had doubts as to whether I was doing the right thing. Only time showed it was the right decision. I feel homesick, I often call my relatives, I tell them about HAE and I try to explain to those who also suffer from HAE how to find their way to a diagnosis. Unfortunately, as they're currently dealing with completely different concerns related to the war, they don't want to deal with anything else.
Alina
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