Rare Disease Day 2021 is coming!

We are a week out from Rare Disease Day 2021. To continue our efforts to spread advocacy and awareness I’m going to make a post each day giving insight into how Epidermolysis Bullosa (EB) impacts our family, particularly our sweet Graham. 7 days, 7 posts.

My hope is that you will read along, follow our journey, and consider sharing so we can reach as many people as possible.

Today I’d like to talk about the bandaging that we do in order to protect Graham’s skin. There is currently no cure for EB and a majority of the care involves preventative wrapping so that we can preserve the integrity of Graham’s skin. Graham can get blisters and cuts on his skin from any friction. Simple things like eating from a spoon, wearing a diaper, and holding a toy can cause blisters. Consequently, we cover most of Graham’s skin in order to prevent it from opening, tearing, and blistering.

We give Graham a bath every other day, first thing in the morning. We wash him with an antibacterial soap and we wrap him immediately following. To wrap him we use a combination of Vasoline gauze, rolled gauze, tubular netting and a soft foam material that’s called Mepilex. We use the Mepilex or the Vasoline gauze as a base layer on his skin, followed by the rolled gauze and the tubular netting to keep it all in place.

We wrap Graham’s arms, wrists, legs, feet, and torso. He doesn’t have much exposed skin. Carl and I work together to do the bandaging and we have worked out a good system to accomplish this. After each bath, it takes around a half-hour to do the bandaging routine. Graham is a trooper but it’s not always easy to keep him content, especially as he becomes increasingly aware of the necessary preparations we need to do to keep him safe. But, nevertheless, we shall persevere.

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars. “ - - Khalil Gibran

#thisisEB