Hey Mike, I know right now it’s hard to believe that the future could be any different. How long have you and your family suffered with this disease that so many people don’t understand? But keep faith; it will get better.
Once I decided to be serious about taking care of my hereditary angioedema, I started by being honest. Not just with myself and my wife, but with my healthcare team as well. It wasn’t easy at first for a sometimes stubborn guy like me, but it has definitely made a difference in the care I’ve received from my healthcare providers.
I believe that hereditary angioedema can present obstacles to all who face it. Yet, as a woman, I think we are confronted with difficulties that may be uniquely inspired by our gender.
The first time I had visible signs of swelling, I was at my parents' house. My parents weren’t home, so when I woke up with both of my hands and wrists swollen, I was pretty scared. They were still swollen when my parents came home and no one could figure out what was happening. [Note that prescription FIRAZYR® (icatibant injection) is a medicine for adults 18 years of age and older to treat acute attacks of hereditary angioedema (HAE).]
Being a caregiver for family members with HAE is definitely an emotional rollercoaster. I experience emotional highs and lows depending on the frequency of my loved ones' acute HAE attacks. To me, those attacks—coupled with the challenges present in everyday life—can make some days feel as unwelcome as a sudden punch in the face. So I don’t allow myself to feel guilty for those times I need to care of myself. After each punch, I remind myself that I’ve earned some time for myself.