Table of Contents
What is epidermolysis bullosa and how is it caused?
Causes of epidermolysis bullosa EB is caused by a faulty gene (gene mutation) that makes skin more fragile. A child with EB might have inherited the faulty gene from a parent who also has EB. Or they might have inherited the faulty gene from both parents who are just “carriers” but don’t have EB themselves.
What is the life expectancy of a person with epidermolysis bullosa?
Types of EB In the more severe forms of EB, life expectancy ranges from early infancy to just 30 years of age. Click below to learn more about each type and meet an individual living with it.
Who usually gets epidermolysis bullosa?
An estimated 1 in 50,000 people in the U.S. have EB. It affects males and females equally and is diagnosed in people of all races and ethnic backgrounds. The risk of having EB is higher for people who have a parent with the disorder.
How painful is EB?
Summary: For patients suffering from epidermolysis bullosa (EB), a hereditary skin disease, even a gentle touch is extremely painful. Now researchers have discovered the causes underlying this disease.
Is EB curable?
There’s currently no cure for epidermolysis bullosa (EB), but treatment can help ease and control symptoms. Treatment also aims to: avoid skin damage. improve quality of life.
How old is the oldest person with EB?
EB is terribly painful, debilitating and in many cases fatal before the age of 30. Dean Clifford is one of these children. Now 39 years old, Dean has overcome many challenges and is perhaps the oldest living person with the more severe form of the disease.
Can you live with EB?
As an inherited disorder with no cure, epidermolysis bullosa (EB) is a lifelong condition. Although its severity does vary from person to person, every child born with EB will face challenges that affect every aspect of life, including the family’s life.
Is there a cure for EB skin disease?
Epidermolysis bullosa has no cure, though mild forms may improve with age. Treatment focuses on caring for blisters and preventing new ones.
Can you grow out of EB?
No matter which type a child has, symptoms are often noticeable early in life. Because EB is an inherited disease without a cure, it is currently considered a lifelong condition.
Is epidermolysis bullosa fatal?
Junctional epidermolysis bullosa generally becomes apparent at birth and may be severe. Large, ulcerated blisters are common to junctional epidermolysis bullosa and can lead to infections and loss of body fluids. As a result, severe forms of the disease may be fatal.
What is E B disease?
Epidermolysis bullosa (EB) is a rare genetic disease that causes painful skin blistering. EB can range from mild to severe. Some patients also develop blisters and sores inside the body, such as in the mouth or the lining of the esophagus (food pipe). It can also impact other internal organs.
What is EB medical condition?
Epidermolysis bullosa (EB) is the name for a group of rare inherited skin disorders that cause the skin to become very fragile. Any trauma or friction to the skin can cause painful blisters. The type reflects where on the body the blistering takes place and which layer of skin is affected.
What is EB awareness?
National Epidermolysis Bullosa Awareness Week (Annually, October 25-31), is a time to increase awareness of Epidermolysis Bullosa (EB), to promote the need for a cure, and to spur advocacy on behalf of families suffering with the emotional, financial, and physical burden of the disease.
What is EB simplex?
EB Simplex. The most common form of Epidermolysis Bullosa , EB Simplex (EBS) is characterised by a lack of adhesion of the skin directly above the basement membrane (the basal layer).