I posted about my grandaughter who has a rare sking condition.?

Question

Sorry my original post wasn't clear. She does have a very mild case of epidermolysis bullosa, I was wondering if anyone out there has it and how they are dealing with it.??? I don't know of any other person outside the family.

Thanks for your answers.

Answer 1

Epidermolysis bullosa (EB)
EB is a group of blistering skin conditions. The skin is so fragile in people with EB that even minor rubbing may cause blistering. At times, the person with EB may not be aware of rubbing or injuring the skin even though blisters develop. In severe EB, blisters are not confined to the outer skin. They may develop inside the body, in such places as the linings of the mouth, esophagus, stomach, intestines, upper airway, bladder, and the genitals.

Answer 2

So it is epidermolysis bullosa... as I had thought it to be..( hoped it would not be)
Its is an inherited the condition where the skin is very fragile and forms blisters on the slightest of trauma.

Important thing is that injury should be avoided in any form. Apply loads of moisturisers to minimise friction and dryness. Avoid extremes of room temperature. Make the child wear mittens at night so that she doesnt scratch herself. You could make her wear clothes inside out as the hem of the dress can cause injury. While travelling in a vehicle see that yo make her sit on a well padded seat (use cushions). Her clothes should be soft and simple.
if she at all gets blisters take proper care of the wound. Ask the doc about dressings. If the dressing gets stuck to the skin soak it with water before you pull it off. See that it doesnt get infected.... Ask the doctor about how to manage the blisters about wot dressings and wot antibiotics to be used.
She could oral injuries.. making it difficult to eat... make sure at such times she has a good, nutritious diet which is soft and easily swallowable.
Just keep in touch with your doc if any blister arises.
Remember its a inherited condition so her siblings can get it too. Tell her parents to talk about it to the docs.
All the best.

Answer 3

you know the diagnosis so here no use to go in detail but i think you are concerned about epidermolysis bullosa simplex .
EBS it is autosomal dominant disorder best way of tt.
1.topical and system antibiotic for secondary infection.
2.steroid to manage severity. 3. dapsone and nicotinamide. 4.care of foot avoid injury.
5proper nutrition.