HAE Patient Story: Finding the Bright Side of Things

Note: This patient story was contributed by one of Patient Worthy’s partners, HAE Junior – an organization dedicated to improving the lives of children and young people living with hereditary angioedema. To learn more about HAE  Junior and their mission, click here.

The author’s full name is not included to help protect her identity.


Since I was a child, I have suffered 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 that my life changed for the better.

Unexplainable, Painful Swellings

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 also tied down by the mysterious swellings in her face, abdomen, and hands. No one knew what they were, why they arose or what caused 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 stomachache, 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, I was misdiagnosed with Moore’s syndrome and for five years, unnecessarily, I took epilepsy medication. But these medications had no effect on my swellings.

Over the years, I learned to deal with my condition, graduated with a degree in psychology and law, found a great husband and had two beautiful boys. I adjusted my diet, sleep and my whole lifestyle to accommodate my illness and I still had no idea what it was.

A Diagnosis in the Czech Republic

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 behind. 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.

Right after moving to Kadaň, I started to swell in my face and neck. It scared me and I had to be hospitalised. The results of my examination were reviewed by the allergologists, who had already forwarded the information to a centre of expertise in Motol University Hospital, Prague.

Bingo!

Dr. 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.

Around this time, I was introduced to the HAE Junior patient organisation, which helped me a lot. It was a very pleasant surprise to see not only that HAE Junior exists, but also what great support they offer to their members. I was not used to such support in the Ukraine.

Thanks to HAE Junior I have learned a lot of information about my condition, received 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 ways I could help my family who stayed behind.

I was also 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 HAE families. We are all very much looking forward to it!

Worries About Loved Ones Remain

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 now know there is treatment for HAE 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. However, time has shown it was the right decision. I feel homesick and I often call my relatives. I tell them about HAE and I try to explain to those who also suffer from the same condition 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.

Written by Alina.

Editor’s Note: Chronic conditions and rare diseases don’t discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a journey to share, click here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.

 

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