Jørn’s HAE symptoms started when he was just five years old. It took another eight years for him to receive a diagnosis. Thankfully, he doesn’t let HAE stop him living his life, his way. Here, Jørn shares his experiences and explains how he lives and works around HAE and focuses on leading a normal life.
The attacks started when I was five, mostly in my stomach, hands, and feet. My mother and oldest brother also have HAE, but no one knew what it was back then. Their attacks were mistaken for allergies. My brother even had his appendix removed.
My brother had a laryngeal attack when he was 19 and luckily the doctor who was treating him had just been reading up on HAE. He followed it up and did a blood test, which led to my brother getting his diagnosis. After that, the rest of the family was tested and my mother and I were also diagnosed. We felt strangely relieved and started putting all the bits of the puzzle into place. Understanding why my mother was often in bed and feeling terrible. Why my brother had the laryngeal attack. Why I suffered from recurrent stomach aches.
My son has now also been diagnosed with HAE. He has weekly attacks. The biggest dream I have for him is that he leads a normal life, the way I have. HAE hasn’t stopped me from doing anything. I travel for about four months a year for work and I’m involved with both Danish and international patient organisations. My daughter does lots of dancing, and we just formed a new club in my town which I chair. My son has started playing golf, so I try and take him out to play a round whenever possible.
I’ve always tried to not let HAE hold me back. I hope my son will be the same.
There’s lots more to tell you about Jørn’s condition:
Living with: HAE
Location: Stuer, Denmark
First signs & symptoms: HAE attacks started when Jørn was five, in his stomach, hands and feet.
Diagnosed: Jørn was finally diagnosed aged 13.
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Everyone living with a rare disease has a story to tell. Whether it affects you directly or you’re a friend, colleague, family member or healthcare professional, we all have our own challenges and ways with dealing with them.