"A message to the young with HAE? Do not give in to the disease!"

20. 6. 2022

I have been living with hereditary angioedema swellings since childhood. The first symptom occurred was when I was two years old – it was in 1977. At that time, my hand swollen and I don't remember it myself, but it was a traumatic situation for my mother. She herself suffers from the disease. At that time, we its hereditary pattern was not confirmed, but my mother understood. Her father and his mother also struggled with the same problems. I still have a twin brother – but he didn't have HAE symptoms until he was thirty. 

Medical science in the time of my childhood was not as far away as it is today. My first diagnosis was an allergy, and was treated accordingly. I was given dithiadene, prednisone and calcium injections. In the first years of my life, it was possible to manage the disease even with little effective treatment, but gradually the swellings began to occur more often. I always had to spend a week in the hospital, where my pain was relieved quite quickly after being injected a strong dose of corticosteroids and I was bored for the rest of the stay. I helped wash the dishes, for which the nurses always rewarded me with compote. And I was looking out of the window to see with which bus my mom was coming. I cried a lot at the time. 

Even so, I had a nice childhood. My friends and I played football, tennis, crawled through cellars and attics, and discovered mysterious Foglar shadows. My mother didn't like it very much, because she had her own experience with the disease. She complained that she couldn't rest her feet on the table side for fear she would get a swelling. That's why she was also afraid that I could swell if fighting as a boy. On the contrary, nothing happened to me even when I was hit by a stone, in short, I grew up in Žižkov. But gradually the swellings began to appear for no reason at all. 

Although it was a difficult situation for my mother, she also remembers that I myself approached attacks bravely as a child. Later, when I was able to realize my situation, I was telling everyone: I'm healthy, I just get swollen sometimes. When the neck is not swollen and there is no risk of suffocation, but for example only the hand, I could still manage. However, I do not want to downplay the disease, everyone experiences it differently. Plus, you never know if the swelling is just going to stay with your hand. If the neck doesn't start swelling as well on the way to the hospital and you don't start gasping for breath...

The path to diagnosis

Problems became more frequent during my childhood and, as a result, trips to the hospital. Gradually, I had a ride of all types of ambulances that were in Prague at that time. I also became a record man in missed classes at school. Everything began to change – albeit slowly – for the better only in 1985. It was then that my parents learned about a doctor in Bratislava who was dealing with a mysterious illness manifested by sudden swellings. In order to diagnose me and a few other people in Prague with the same symptoms, my dad travelled by train to deliver blood samples stored in an ice cream thermos. 

The results of the laboratory tests confirmed hereditary angioedema and 1985 was the first time we were able to correctly name my disease. The disease is hereditary, which also explained why the same troubles plagued some of my relatives. But we were at the beginning of the journey – we had a diagnosis, but not an effective treatment. Gradually, doctors tried various approaches, including blood plasma transfusions, but they gradually stopped helping. With one of the drugs, I, in turn, suffered thrombosis of a vein on my leg as a side effect. Also, it was not at all easy to go to the hospital for every intravenous application, because the swelling was already occurring several times a week. It started mainly in the evening, and the doctors in the night emergency rooms, who knew nothing about my diagnosis, were not very happy to see me show up.     

First treatment

Dr. Olga Kryštůfková was a great help for me, as she was able to negotiate an exception for the then unavailable medicine with the insurance company. I could have had it at home, but in limited quantities. I have her contact stored in my phone under the name Angel – this is how much I appreciate what she has done for me. I was sorry that I had to transfer from her care to the newly established HAE center in the Motol University Hospital. There, however, Dr. Marta Sobotková soon became my next angel. After years of hardship and frequent swellings, I became very limited in my private and professional life. If I didn't have an IT job, I would have probably retired early due to inability to keep working. Hold my little son was enough for my belly to painfully swell like a balloon. However, the doctor fought for a year to ensure that I receive reimbursement for an innovative biological prophylactic treatment. And in the end, she succeeded, for which I am infinitely grateful to her, because she returned my life to normal. Among my angels is also Dr. Pavel Kasal, who was the first to treat me properly, although not yet under the correct name of the diagnosis. At that time, the swelling was called Quincke's edema, later it was renamed HAE. 

I became the first patient in the Czech Republic to have the opportunity to try this treatment. We tested the frequency of the application until we found the optimal one once every three weeks. Since then, I have been living as if a miracle had happened, and not only because of the absence of swellings, which I already took as part of my life. But mainly because I could stop thinking about my illness. If I didn't have a calendar reminder telling me to administer myself the regular injection, I wouldn't even remember that I have HAE. I can live actively without restrictions. That is, I can work, go on trips with the family and pursue my hobbies. My friends and I run a museum of Czechoslovak fortifications and a railway museum. I am a member of the Czechoslovak Legionary Community and we organize aid to war refugees from Ukraine. Right after the beginning of the Russian invasion, we accommodated dozens of people in Prague, and I didn't have time to go home and take off my shoes for three days – yet thanks to the treatment, I did not experience any swellings during all this time. 

Message to the young with HAE

I would especially like to tell children and young people with newly diagnosed HAE not to give in to the disease. Carry your rescue medication at all times, but try to keep HAE out of your head as much as possible and enjoy activities with peers. It's not good for mental health if you're always watching yourself – and the psyche is important in managing every illness. Fight battles with the help of modern medicine and live life to the fullest. You will find great support from HAE Junior patient organization. It will provide you with important information and you will find out the most important things: HAE complicates life, but we need to learn to overcome these obstacles. Do not give in to the disease! 

I myself observed that it was good for me to be active, and the body was used to some effort. For example, when I pulled out my bike after the winter as a boy, after the first ride my bottom would swell because of the seat. But when I took the bike again, it didn't happen anymore, until after the following winter – I think my body needed time to get used to the new kind of effort. This is my experience and story. Look for your own ways to live with HAE. If possible, actively. 

Pavel Dobrovolný (47 years), HAE patient

Contact:

HAE Junior non-profit organisation
Wichterlova 2372/8, 
Prague 8, 182 00
Organisation ID 08749787

info@haejunior.cz
704 007 717

Contact for journalists:
media@haejunior.cz

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