When I use the term epatients, people ask me what that means? I stumble to explain.
Here is an example from a glossy magazine, Good Housekeeping.
I started getting connected with other EB parents through my blog. It was a tool God used to save Jonah. I’d describe issues we were facing, like acid reflux or not eating or bandages that stuck, and moms would suggest what worked for their kids. To our doctors’ credit, they didn’t look at me like I was a crazy person when I brought in suggestions but gave them a shot. We all partnered to try to get him as stable as possible.
Read the whole article “My Son Blisters When I Hug Him” here.
Until I get my elevator speech smoothed out, here is another explanatory link.