Columns

I Want to See More Diversity in the Media

This month, I want more diversity. I want to see more reality in the media and in advertisements and commercials. Show us real people who have stretch marks, scars, and imperfections, because that’s normal. Normalize different body types I want society to normalize different body types and to stop body…

Our Global EB Community Continues to Inspire Me

This month, I was once again impressed by how well connected the epidermolysis bullosa (EB) community is. I remember when I was younger, no such connection existed on social media like we have today. Rare is many – but not always locally As EB is a rare disease, only a…

What ‘Rare’ Means to Me This Rare Disease Day

A few days ago, a friend working in healthcare communications asked: “What does rare mean for you?” It got me thinking. I answered: “Rare is something special, something unique. Something that doesn’t exist very often. But also, it’s something you should not forget about, something you shouldn’t oversee. Are we…

How We Began Educating Our Community About EB

There are days when Jonah, my 11-year-old son with epidermolysis bullosa, and I feel like educating folks about his condition. And there are days when we don’t. When he was younger, I would intercept the stares, block him with my body, and do the educating…