According to the Dystrophic Epidermolysis Bullosa Research Association (DEBRA), a U.S. based nonprofit organization that supports the Epidermolysis Bullosa (EB) community, Epidermolysis Bullosa (or EB) is a rare, genetic connective skin condition in which not enough protein is produced to allow skin to adhere to itself. In the U.S., one of every 20,000 births are affected by EB. There is no cure and daily wound care, pain management and protective bandaging are currently the standard treatment.
My initial reaction to EB was fear – I could barely pronounce it, and it seemed so daunting. I was a first-time parent, and understandably concerned whether or not I would be up to the challenge; I’m not that great about taking my daily multivitamin – could I handle daily bandaging?
I envisioned running around, trying to locate appropriate supplies. I didn’t realize supplies could be ordered and delivered the next day – I’ve even found EB supplies on Amazon.
Through a lot of Googling and support from the amazing and supportive EB community, what once seemed so daunting turned out to be the best decision ever.
What does parenting a child with EB look like? I’m not an expert on EB nor parenting and although I have no other parental experience, I’m sure parenting a child with EB is like… parenting a child!
My daughter is like any other child – she loves to dance, draw and play, and wants to be a better artist and a teacher, doctor, and mother when she grows up!
With a few common sense adaptations, we’ve been able to enjoy the beach, Disney, go on vacations and other events. For example, like many members of the EB community, my daughter doesn’t do well in heat, so we’ll visit the beach early or late in the day, and we’ve used a cooling vest as suggested by other EB community members. Contact sports are out, but she’s been active in dance, scouting, horseback riding and other activities.
When an EB related situation flares up, I reach out to her EB team or the EB community for help and support. Lately she’s become a bit self conscious about her bandages. Most of the time people are curious and most have been kind. Within her school I’ve noticed that there are many children that have a challenge – there are children with allergies and other issues, but the bottom line is this: they are all just kids.
Treatments for EB are on the horizon, and there is a great deal more information available than in the past. My daughter is so brave – much braver than I – and if I hadn’t overcome my fear, we would have missed out on the best decision ever!
– guest post by Kimberly