It’s a parent’s natural instinct to protect, which is why Katherine’s mother and father chose not to tell her she had HAE until her first attack, aged 17. That was six years after her initial diagnosis. Katherine has chosen not to let self-pity hold her back. She says that having the disease has made her a better planner, as she had to eat carefully to avoid triggering the symptoms.
I had my first attack aged 17. I had pains in my abdomen for a couple of days so I was taken to hospital. They told me that I had suspected appendicitis and needed surgery. At that point my dad stepped forward. He said that he and my grandmother had lived with HAE for many years and that I had tested positive for it when I was 11. My parents had planned to tell me when I hit 18, as I’d been symptom-free until then.
Learning about my diagnosis was tough. I’d gone from being well, as far as I was aware, to being told that I have a genetic disease that I’d have to live with forever. Because of my age, I was going through a very hormonal, rebellious phase and didn’t look after my body. Once I got a bit older, had a steady job, got engaged, and realised that I had a future in front of me that I really wanted, I knew that I needed to change the way that I was living.
Most of my attacks are abdominal. For a long time, I found it hard to distinguish between what were symptoms of my HAE and what weren’t. Then I started to monitor what I ate and found that I had gluten sensitivity. So now I don’t eat gluten at all and I limit my dairy intake. I also like to bake, which really helps me to stay in control of what I’m putting into my body. It’s a great stress reliever too. This is just my experience of course, everyone’s HAE impacts them differently.
It would be easy to wallow and feel very sorry for yourself. You could let HAE really get in the way of everything that you’ve always wanted to do. Or you can make a decision to get on top of it and be a better planner. I decided not to let HAE stop me from doing anything, and that’s how I live today. With each new challenge, I’m going to talk to my doctor and plan what I need to do next to keep living well.
There’s lots more to tell you about Katherine’s condition:
Living with: HAE
Location: London, UK
First signs & symptoms: Katherine had her first HAE attack when she was 17.
Diagnosed: Katherine tested positive for HAE when she was 11 but wasn’t aware of the diagnosis.
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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.