This column is the first in a series of interviews with a mother, a daughter, and a spouse about each one’s hereditary angioedema advocacy journey. In today’s healthcare environment, advocacy has never been more critical. While politics often complicate conversations around healthcare, one truth remains: People living with rare…
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It never fails. Around this time of year, it’s not unusual for everyone’s cellphone in our house to emit that piercing sound to alert us of an emergency notification. And the emergency? Severe weather in our area. Residents of northern Alabama, where I live, are used to hunkering down during…
I was superexcited to hear that this year’s US Hereditary Angioedema Association summit is in Baltimore, as that’s my husband’s hometown. His family still lives in that area, and given his mother’s decline, we were planning a trip back east sometime soon anyway. Even though my daughter Leah and…
Being a parent is never easy. I should know, as I have eight children. I have four biological children from my first marriage, three stepchildren from my second marriage, and one adopted daughter. Two of my bio kids, my adopted daughter, and I all live with angioedema. Being a…
After waking up in the middle of the night and emptying the contents of my stomach all over the floor, I weakly walked to my parents’ room and woke up my mother. When she finally understood what I was mumbling, she got up, cleaned my floor, cleaned me up,…
“My body just locked up and I collapsed,” Matthew Nawn recalled. Known for its difficulty, the Boston Marathon winds through eight different cities and towns across 26.2 miles. With over 30,000 participants each year and an average finishing rate of 84%, the annual race is not for the average runner.
While I cope with hereditary angioedema, Ehlers-Danlos syndrome, and other conditions, I’ve also been touched by a less rare condition that’s not a disease: autism. The first time I learned about autism, I was in college studying for my education degree. I took a psychology course that mentioned…
“Did someone lock the door?” It was a common question we’d hear whenever we got into the car. My father was meticulous about ensuring that the front door of our home was always locked. Although we lived in a great neighborhood, our house sat on a large corner, providing ample…
Four members of my immediate family have multiple types of angioedema. Three of us have hereditary angioedema (HAE) and require only maintenance medication to treat it, and we rarely use rescue medications for breakthrough attacks. When a symptom crops up, we take time to do a self-analysis…
Some days, I wake up and immediately feel the weight of my own body, as if my bones are made of lead. Other days, I wake up with my mind racing before I’ve even had the chance to open my eyes. Living with hereditary angioedema (HAE) and multiple…
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