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I’ll begin by saying that for the longest time I thought my family and I were alone in this struggle until I came across the HAE web page. HAE is a common ailment in my family, stemming from my mother’s side of the family.
My first attack was at the age of seven. I had severe stomach pains that were (to say the least) unbearable. Of course, the doctors in the ER diagnosed me with gastroenteritis and sent me on my way with pain and nausea medications. My attacks have always been frequent and unpredictable. For example, if I sat on bleachers too long, my buttocks would begin to swell and the swelling could travel down my thigh into my leg. Or my attacks in my stomach (which by far is the worst pain I have ever felt) could occur with no trauma to the area at all.
A few years ago I had my first facial attack, which began as a small lump in my cheek. Four hours later I was admitted to the CCU with my entire face swollen beyond recognition (you can see my photo under Diagnosis). This was the most horrifying experience that I’ve ever had in my life. My children were afraid to see me, my husband was frightened that he would lose me, and I was certain that this time would be the one that took my life. Thankfully, the doctors in the CCU were willing to listen to my pleas to research HAE and they started a fresh frozen plasma regimen that I believe helped to reduce the swelling in time. After several more attacks over the years, I decided enough was enough and at the age of 19 I made it my mission to solve this family mystery. I located a doctor who was willing to help me research my disorder and diagnosed me with HAE.
When discussing HAE with friends and colleagues, I find that it’s difficult for people who do not live with HAE to grasp the severity and difficulty we face on a day-to-day basis. The first thing they usually naively say is, “There’s no cure for that” – which is my personal favorite.
Among other things, work has been my greatest challenge. Because of the frequency of my attacks, I have been constantly absent from work. Because the attacks are most often in my extremities (hands and feet), it’s not necessary to visit the doctor. This in turn causes an issue with proving that I am genuinely ill and cannot make it into work, let alone drive with swollen feet or hands that burn to the touch (due to the skin stretching beyond its normal ability).
However, with all the issues this disorder has caused and all the setbacks I’ve had in relation to my career and personal life, I am living. I have a wonderfully supportive husband and two amazing little boys. For all the downs there are, there are so many more ups – that’s my HAE story.