Columns

10 gifts to offer medical staff this holiday season

I walked across the Court Avenue bridge into downtown Des Moines, Iowa, accompanied by Michael, my spouse. We were greeted by smells of fresh coffee and breakfast sandwiches. It was late October and one of the last outdoor farmers markets of the year. I bought an apple cider in a…

A look at this year’s International Porphyrias Symposium

I recently returned from The International Porphyrias Symposium 2023 fueled with energy. The conference, held Oct. 26-29 in Bethesda, Maryland, featured a blend of scientific minds and patient experiences. Every handshake and shared story felt like a collective step forward in understanding the group of genetic disorders known as…

Overcoming the hardships of explaining invisible diseases

My youngest son’s journey to a diagnosis of erythropoietic protoporphyria (EPP) in 2009 took a long and winding path that’s familiar to most patients grappling with a rare disease. Yet one distinctive factor compounded this challenge: EPP symptoms are largely invisible to someone unfamiliar with this…