Living with EB, by Grace Fincham

My name is Grace and I have EB.

If you have EB, you probably are well aware of the struggle that it takes to live every day with EB. But if you are someone who does not have EB, allow me to educate you.

EB can cause incredibly sore skin and there is nothing we can do to control that. No amount of ointments or creams or bandages are going to fix the genetic issue and they just keep coming back and back and back. Anytime we fix something, a new one appears.

If you know someone with EB, trust me when I tell you they are a warrior.

If you think you’ve heard them upset or in pain, trust me. They are in pain or upset 10 times more than they are letting on. So they are probably really struggling if you hear them upset or in pain.

It takes so much effort just to do basic tasks like get up and walk around, so the fact that you have the pleasure of getting to know them is so incredible.

EB feels like you are being set fire to, if you can imagine that. It’s not nice, and currently there is no cure for it, but people like the person that you know, and me, and the people I know, do so much to make sure we get to live every day to the fullest the same way that you get to.

And that is pretty cool.

So just keep in mind the next time you’re talking to your pal who has EB, what they are going through and treat them with kindness like I know you would treat anybody else. And some empathy. Try to understand what they’re going through and how impressive it is that they are able to do anything.

So, you know, give them some patience.

Thank you.