I have experienced HAE attacks for quite some time. However, I wasn’t diagnosed until I was well into adulthood. My grandmother experienced similar pain, especially abdominally, and she was always very supportive when I endured what she called “the belly.” In college, I spent a good deal of time in bathrooms before each and every test because thinking about the test sometimes gave way to an attack. To be honest, a small part of me thought the pain and the symptoms might just be in my head.
Into adulthood, I tried not to let HAE stop me from having a life. I got a job in the medical field as a nurse, and carried on despite the occasional HAE attack. It was when a fellow nurse saw me with a swollen belly and immediately suspected cancer that I finally convinced myself to really seek answers. I began by seeing my obstetric/gynecologist, and then multiple other specialists, including gastroenterologists and allergy/immunologists. I was tested for many different types of diseases and illnesses. And this lasted for several years, because no one could seem to figure me out. Maybe it really is all in my head, I thought.
Eventually, I moved to a small town and began seeing a doctor there, who listened carefully as I spoke to him and told me he would not give up on me. He did what he could for me and then sent me to a university hospital for further analysis. After having lab work done, I sat down with this new doctor, who asked me to start from the beginning. As I told him my story of all the things I'd been through over the years without any answers, he said he believed I had HAE. I felt only relief. The pain and the symptoms were real. At that appointment, the doctor explained the basics of HAE to me and sent me home with not only a new understanding, but a plan for what I should do the next time I experienced an attack. I finally looked toward my future with a positive attitude and a new hope, something I hadn’t allowed myself to do for too long.
What does the journey to your diagnosis look like? Leave a comment below!
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