“I decided I will not let [HAE] stop me from doing anything.”
Location: London, UK
Office Manager & Project Secretary
Baking, writing, drawing/painting, sewing, exercise
First Signs/Symptoms: Age 17
Diagnosis: Age 11
My first attack happened when I was 17. I was experiencing pain in my abdomen for a couple of days. I was then taken to the hospital where I was told I had a suspected appendicitis and needed surgery. It was then that my dad admitted that he and my grandmother have had HAE their whole lives and that I had tested positive for HAE when I was 11, but my parents were waiting until I was 18 to tell me as I did not have any symptoms.
It was difficult to learn of my diagnosis—I’d gone from being well, as far as I was aware, to being told that I have a genetic disease that I’ll live with forever.
Because of my age when I was diagnosed, I was going through a very hormonal, rebellious streak and did not look after my body. Once I got a bit older, had a steady job, got engaged, and realized that I had a future in front of me that I really wanted, I changed the way that I was living. Most of my attacks are abdominal, and for a long time I got confused between what were symptoms of my HAE and what were not. I started to monitor what I ate and found I had gluten sensitivity, so now I don’t eat gluten and limit my dairy. I also like to bake, which helps me be in control of what I eat and also relieves stress, but this is only my experience, and everyone’s HAE is different.
You can wallow and feel very sorry for yourself and allow HAE to get in the way of everything that you’ve always wanted to do, or you can just be a better planner. I decided I will not let it stop me from doing anything, and with each new challenge I’m going to talk to my doctor and plan from there.
“HAE hasn’t stopped me from doing anything in my life.”
Location: Stuer, Denmark
Profession: IT Department Head
Danish and international patient organizations, Chairman of my daughter’s dance club
First Signs/Symptoms: Age 5
Diagnosis: Age 13
I started having attacks when I was 5, 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, and my brother even had his appendix removed.
When my brother was 19, he had a laryngeal attack. The doctor at the hospital had just read about HAE, so he did a blood test and diagnosed my brother with HAE. The rest of the family was tested, and my mother and I were also diagnosed. We felt a sort of relief because we started to put bits of the puzzle into place — understanding why my mother was often in bed and feeling ill, why my brother had the laryngeal attack, and why I had stomachaches.
My son has also been diagnosed with HAE and has weekly attacks. For him to lead a normal life would be the biggest wish I could have for him.
HAE hasn’t stopped me from doing anything in my life. I travel around 120 days a year for work. I’m also involved with both the Danish and international patient organizations . My daughter does a lot of dancing, and we just formed a new club in my town where I am chairman. My son 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 down.
The information on this page is not meant to substitute for the advice provided by a medical professional. Always consult a physician if you have health concerns.