Columns

Voices for change in a village of rare disease advocates, part 1

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…

Travel plans for an HAE conference include caution

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…

How phone marathons can lead to caregiver fatigue

“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.

My family’s personal journey to greater autism awareness

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…