From the age of 7 I had painful, unexplained and reoccurring swellings which became more frequent as I got older. These swelling attacks affected all parts of my body, my face, feet, legs, back, neck, genitals – anywhere and everywhere! I also suffer from internal abdominal swelling which has symptoms similar to food poisoning. There didn’t seem to be anyone else in my family that was affected by this strange condition.
Living your life in constant fear of the next swelling attack is difficult, and with the swellings coming on every 7-10 days it is very hard to get on with life. I always had to have a Plan B. There really didn’t seem to be any strict pattern on when or where a swelling would occur, but sometimes an attack would start when I bumped myself, or from repetitive strain. Other times it came on from doing nothing. Along with the swelling, symptoms include vomiting, diarrhea, fainting, hot and cold sweats, and pain. This disorder can be fatal if there is swelling in the neck and/or larynx.!
Over the years I went to see many different types of physicians, and was sent for many tests and unnecessary procedures looking for an answer. After almost giving up trying to find out what was wrong with me I went to a different GP, he sent me on to an immunologist, within 5 minutes of meeting, the immunologist I had the name of my condition which is Hereditary Angioedema (HAE.) It’s a rare genetic disease blood disorder, and I had a blood test to find out which type I had (Type 1 or Type 2).
Once I was on medication I felt like I got my life back. Things are improving for patients with HAE as new treatments are becoming available, there is research being done, and interest in the disorder.
Through the years, I thought I was a freak because no one could tell me what I had. My diagnosis came at age 33 (26 years after my first symptoms!) In the following years I met with a group of patients, and from there a few of us started HAE Australasia which is a Not for Profit Patient Advocacy Organization with a mission to educate not only patients, but also clinicians, and to raise awareness in the community of this condition which could affects up to 450 patients in Australia, and up to 50 in New Zealand.
HAE can be fatal! Raising awareness of this condition is vital to saving lives.