I grew up in a family where I was the first to be diagnosed with EB Simplex (EBS). I never knew anyone else with the disease. At times it was very lonely.
Now my two children, who both have it, have been able to make many “butterfly friends” as they say. It’s wonderful seeing them share stories, experiences, and tips as well as understanding all the different forms and severities of EB.
I’m so thankful for our EB community that is constantly helping each other out in any way we can!