CLICK HERE for the Spanish version
Epidermolysis Bullosa, EB, is a very difficult condition to live with, even with the mildest forms.
These are things of outmost importance in helping your child coping with EB:
- Accept the EB and accept your child for who he is.
This sounds simple, but it’s not. There is a certain degree of loss and mourning when a child is not born healthy, and it takes parents different amounts of time to learn to accept things how they are. This may take months or years, depending on the circumstances. The amount of time will depend on many factors… such as if this is your first child… or last, your age, and who you are and your upbringing. But, remember, the more accepting you are of your child’s EB, the less of a ‘big deal’ you make of things, the happier and comfortable your child will be.
- Remember, your child is #1, EB is to be treated separately and “secondly”.
This is also easier said than done, especially when the children are small and there is so much care involved. But it’s important for the kids to grow up not thinking EB is all they are, because their little brains are working just fine, and they can do so much! Remember, most EB kids are straight-A students!! Skin care is important, as their health and life depends on it, but it is important for their mental well being, to help them be children, and you need to help them enjoy all the things in life a normal child enjoys, to play, to laugh, and to learn, with all the potential and need for joy as any other child.
- Don’t be afraid to consider your child ‘disabled’.
This is one of those things no Dr will ever tell you, and parents are afraid to consider, but it’s the truth. Go ahead, get a wheelchair (it will save your child’s feet on long walks), get SSI (for financial help if needed), apply for help (Dept. Of Developmental Disabilities), get disabled plates (for extra wide spaces to get in and out of the car), it will make your child’s life much easier.
- Teach your child to explain EB
There will come a time where you might be a breath away and not hear someone ask if your child got burned or has chicken pox. But your child heard and wants to answer. What is he going to say? This will happen often once he/she enters school, so, better be prepared. They can say something as simple as ‘I was born with a skin disorder’, or they can even hand out cards that explain what EB is (my favorite Option). Whatever you decide, make sure to inst