I wrote this last year, and resharing because I feel it's important.
EB Awareness Week Day 5
There are many things I would like to post about; however, many in the EB community would find them insensitive, or the topics are too personal for me to post publicly.
But today, this post is for all the EB parents who don't have EB themselves
When other EB parents think of me, they think of me as an EB parent. They often forget I HAVE EB too. I was someone with EB LONG before I became a parent of children with EB. I have 49+ years of experience living with EB.
So when I suggest that you wrap your child, it's not because my way is the correct or only way; it is because I know how painful an open wound is when it hits open air, or how quickly a wound left unbandaged can become infected.
When I ask how your child's weight is or how they are eating, it's not because I am being nosy; it is because I understand how EXHUSTING eating can be when you have EB. Some days, I wish I had a feeding tube.
For the times I asked about having bloodwork done or the results of the bloodwork, it is because I know how vital nutrition is for wound healing, and how important it is for those levels to be monitored. I have experienced doctors who don't understand that normal results for someone with EB are different for someone without EB. We are conditioned to blindly trust doctors, but when you have a chronic disorder, it is VITAL to ask questions and ask for a copy of the results. It is important to know that what the doctor is telling you is actually the truth, and not just what they think you want to hear to get you out the door quickly. Even when you attend an EB clinic, it is important to ask questions!! Ask why certain tests are needed or what they are looking for. Ask how many calories, fats, proteins, etc, your child needs each day to heal, gain, and grow.
When I share all the complications that are associated with EB, it is not to scare you; it is so you understand what to be on the lookout for and to encourage you to research things on your own. Information is vital not only to surviving EB but also thriving. I have experienced that many complications can be prevented if you know what to monitor and what to do when that complication starts to appear.
When I suggest things like a g-tube placement, a trach placement, using certain vitamins, or suggestions for diet, it is not to pressure you to do those things; it is to let you know your child has options and that I have seen over the years how beneficial certain things can be for those with EB.
I know some EB parents find my approach aggressive, or flat-out find me annoying; you all know who you are. I don't reach out to make friends or to insist my way is right. I do it because I know the pain of losing a child to a preventable complication, and that is a pain I don't wish upon anyone. I reach out because I want ALL EB parents to have as much information as they can early on, so they can make the best decisions when it comes to their child's care and future.
I wish there was a way to share before and after pictures of my kids to show how beneficial bandaging is; how beneficial a tube is; as well as the difference between one kid with a gtube and one without. But there is no way to control pictures once they are out there, and i have seen too many other kids with eb haven't their pictures stolen, and used inappropriately. And I won't put my kids at risk, no matter how old they are.
No one needs to comment. I wanted to turn off commenting, but FB seems to have taken that option away. I am not looking for anything by posting this; I just wanted to share what is on my mind. #pleasebekind
#ebawarenessweek2026 #epidermolysisbullosa #ebawareness
