HAE attacks seem to interrupt my life. But by working with my doctor, I have a personal plan in place for when I have an acute HAE attack. The knowledge of having a plan gives me a feeling of reassurance with a disease that seems to make my life seem so out of control at times.
I had a hard time talking to my employer about my HAE. I was concerned that I could lose my job due to my condition or be seen as unreliable, but I couldn’t work when I was having HAE attacks. My boss thought my explanations were excuses… until the day my wife called in sick for me as we rushed to the hospital.
Being a Shire Ambassador has been a blessing to me for many different reasons. I feel honored to share my story and meet others who are living with HAE themselves or have someone else in their lives who has HAE.
My wife has tried many times to tell me how difficult it is watching someone going through the symptoms of an acute HAE attack. But I never really understood what she was going through as a loved one helping me until I was sitting at a close family member’s bedside, watching over him after a troubling turn in his health. That experience of being only able to stay close by and try to be supportive has given me new respect and admiration for my wife and has made me more aware of what I can do to show her that I appreciate her. And that awareness has taught me that little things can go a long way in showing her that I care.
For me, it’s heartbreaking when I miss out on events or activities because of HAE attacks. Managing the symptoms of an HAE attack can be a challenge. Trying to add friends, family, work, hobbies, and school into my life, along with the possibility of HAE attacks, can, to me, sometimes be overwhelming and seem almost impossible at times. HAE attacks are unpredictable, and despite my best intentions, sometimes it can be difficult for me to keep plans.