Columns

How I Stay Safe During Summer Travel With Epidermolysis Bullosa

With summer comes traveling again. For people living with a rare condition, traveling always requires significant preparation, as I discussed in my previous column. When I wrote it, I was busy packing for summer vacation. I packed my beach towel, bikinis, sunglasses — and wound dressings, bandages, needles,…

Put Courage Into Those Facing Hard Battles

I have had two friends in the last three months give birth to premature babies. The first, Izzy, was born six weeks early with a genetic condition called DiGeorge syndrome and an interrupted aortic arch. She is home now, on supplemental oxygen, after spending more than three months…