My name is Hope and I am 55 years old. I live in a small town in Utah. I was diagnosed with HAE in 2010.
My HAE story begins with my first pregnancy at the age of 34. Before that time I had no noticeable symptoms, except a severe allergy to bee stings. Just a few days before delivering my son, the bottoms of my feet began to swell and felt as though they had been stung by bees. I thought it was just an odd symptom of pregnancy. After having my son I continued to have swellings, rashes, itching, burning, severe intestinal cramping and diarrhea. The symptoms stopped with my second pregnancy at age 36. They started again after I stopped breast feeding my second son. When my periods resumed, I noticed things were much worse during my periods.
Soon I was completely disabled by symptoms. My children grew up with a mom spending hours in the bathroom in agony. My face, hands and feet were often grotesquely swollen. During my many trips to the ER, nothing worked to reduce the swelling except time. I went to an allergist (the best the University of Utah had to offer) and after testing for numerous allergies, he found nothing and suggested that I not take hot showers (only use warm water) and faithfully apply natural oils to my skin after showers or baths. I followed this routine religiously and, of course, to no avail.
During my HAE journey I found I could not tolerate ibuprofen and very little aspirin or Tylenol. This severely limits, if not eliminates options for pain relief! I was once in the hospital with a swollen, painful belly, was refused treatment, and told I was “drug-seeking”. I was not asking for anything for the pain. I learned to manage my symptoms as best I could, but missed many days of work and endured much pain and embarrassment because of something I could not explain. I also had enough common sense to know it was not “all in my head” as some people suggested.
I had just had a particularly bad period of symptoms lasting many months when I heard a voice on TV talking about symptoms just like mine! I was left in tears as I listened to the story about HAE on a medical program. I felt overwhelming joy when, for the first time, I knew I wasn't alone in my struggle. I took the information to my doctor who diagnosed me as HAE with Normal C1INH. At that time there still was no treatment for me, but at least I knew it had a name, and that gave me great comfort.
I have just recently found the HAE website. I have much to learn, but I am thrilled at the possibility of treatment. I want to learn all I can and advocate for myself and others like me. I want the world to know the truth about HAE.