Have you ever heard of Epidermolysis Bullosa? Yeah, most people haven't. As a young teenager, I knew a boy that had it, but I never realized the insidiousness of this disease until fairly recently. Scroll down to learn more.
The reason for this post is to bring more awareness AND to let you know about the EB Auction for Baby Jonah. He's that cute little guy shown on the first two buttons on my sidebar and he has Junctional EB; a severe form of the disease. He will be ONE YEAR OLD the day of the auction; quite an achievement for a child with his type of EB. Funds raised from this auction will help fund research as precious little is being done due to the rarity of it. Go here or click the first button on my sidebar to find out more about how you can help.
What Is Epidermolysis Bullosa? (source)
Epidermolysis Bullosa (EB) is an illness that causes the skin to be fragile. Because the skin is so fragile, it can be easily injured, causing painful blisters to form. These blisters can cause serious problems if they become infected.Some people with EB have a mild form of the disease with few blisters. For others, there may be many blisters on the skin. Some people develop blisters inside the body—in places such as the mouth, stomach, esophagus (the tube that allows food to move between the throat and stomach), bladder, and elsewhere.
Who Gets Epidermolysis Bullosa?
Anyone can have EB. Generally, the symptoms first appear in babies or toddlers.What Causes Epidermolysis Bullosa?
Most cases of EB are hereditary (runs in families).How Is Epidermolysis Bullosa Diagnosed?
A doctor can identify EB by taking a small sample of skin and looking at it under a microscope.What Are the Symptoms of Epidermolysis Bullosa?
Skin blisters are the major symptom of EB.How Is Epidermolysis Bullosa Treated?
If you, your child, or another relative has EB, coping with the symptoms can be difficult. You do not have to handle EB alone. There are doctors, nurses, social workers, clergy members, psychologists, dietitians (people who study food and nutrition), and patient and parent support groups that can help.Preventing Blisters
To protect the skin from forming blisters, this is what EB patients must do:- Avoid getting too hot by keeping rooms at an even temperature
- Apply lotion to the skin to reduce friction and keep the skin moist
- Wear soft clothing
- Use sheepskin on car seats and other hard surfaces
- Wear mittens at bedtime to help prevent scratching.
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