My HAE – Flo’s story

My name is Flo and I am 10 years old. Lots of people in my family have HAE and I started getting swellings when I was two years old.

My Mum was trained to give my injection at home as soon as my attacks started. When I was little I used to get quite upset, but Mum always gave me sweets and a special video straight after the injection so that helped a bit. Anyway, it was better to have a jab rather than a horrid tummy pain.

I get attacks affecting my tummy, hands, feet and face about every 10 days. I have just been trained to give my own injections, which is really cool. I get HAE for lots of reasons, two ways are: When I bump myself or when I get excited or sometimes I just get it for no reason.

The teachers know all about my HAE, so they can ring Mum if I have a swelling in school time. I can do everything my friends do, and I will be going away on the school adventure week this summer, which is very exciting. My Grandma (who also has HAE) and Grandad will be staying half an hour away from the holiday camp in case I need an injection.

My dad has now learnt to do my injections for me as well which is really good. My brother who is 8 has HAE though he never gets the symptoms yet. I have one and a half tablets of tranexamic acid every morning and evening.