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.
I am a lot of things—a daughter, a sister, a wife, a mother of two, and a full-time employee with a very busy work schedule. But perhaps most importantly, I am a “caregiver.” Some may call themselves caregivers or caretakers, but for me, it’s all about caring for my husband who is living with HAE. I make it very clear to others in my life that I will drop what I am doing at a moment’s notice to be by my loved one’s side at his time of need, and I wouldn’t have it any other way.
When I wrote this, I was thinking about my family’s plans for this summer. We started the summer out with a bang for Father’s Day: boating on Saturday and attending a cookout on Sunday. I spent the week preparing things so that we would be ready to go, but it seems I ALWAYS have to have two plans in place. “Plan A” is for when the “entire” family—me, my two children and my husband, David—attends, and “Plan B” is for when it’s just me and the two kids attending the function. I do this because I am well aware that my husband’s HAE has a knack for rearing its figurative “ugly head” at the most inopportune times.
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.
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.