There are times when the fear of my HAE symptoms makes it difficult to just get through the day—eight hours of work, attending school, and caring for family. Often, when I return home in the evening, I want to retreat to my bed and not move until morning. I have made it a priority to fight that desire. Although it can be taxing at times, I personally believe exercise in my life is important. You should always talk to your doctor about any lifestyle changes, including starting an exercise routine.
Day by Day
Attending my first HAEA conference was a life-changing experience for me. My friend recently attended the 2014 HAE Global Conference, and her “take-aways” reminded me how the worldwide HAE community has empowered me.
At my first Patient to Patient Program dinner as an Ambassador, I was embraced by a young woman with dark hair and kind eyes. As she released me from the hug, I could see tears streaming down her face. She had waited her whole life to hear from others with HAE, and felt understood in a way she never had before. Seeing the positive impact that hearing from others with HAE can have on people is the reason I love attending P2Ps as much as I do.
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.