What is the life expectancy of someone with EB?
Junctional epidermolysis bullosa JEB accounts for about 5 percent of EB cases. The life expectancy of children with JEB is poor, and about half do not survive past the first year of life, and many die before they are 5 years old. Few children with JEB live into adulthood.
Can EB be cured?
There’s currently no cure for epidermolysis bullosa ( EB ), but treatment can help ease and control symptoms. Treatment also aims to: avoid skin damage.
What are the symptoms of EB?
Symptoms Fragile skin that blisters easily, especially on the hands and feet. Nails that are thick or don’t form. Blisters inside the mouth and throat. Thickened skin on the palms and soles of the feet. Scalp blistering, scarring and hair loss (scarring alopecia) Thin-appearing skin (atrophic scarring)
What is the EB disease?
Epidermolysis bullosa ( EB ) is a group of rare medical conditions that result in easy blistering of the skin and mucous membranes. Blisters occur with minor trauma or friction and are painful.
Is EB painful?
According to the findings of the MDC researchers, this explains why EB patients are more sensitive to touch and experience it as painful. Even the slightest touch causes a stinging sensation like being stabbed with pins; the body is covered with blisters and the skin is inflamed in many places.
What is a butterfly baby?
Epidermolysis bullosa is a rare genetic condition that makes skin so fragile that it can tear or blister at the slightest touch. Children born with it are often called “ Butterfly Children” because their skin seems as fragile as a butterfly wing.
What causes EB?
EB is caused by a faulty gene (gene mutation) that makes skin more fragile. Usually, a child with EB will have inherited the faulty gene from a parent who also has EB. It’s also possible for a child with EB to have inherited the faulty gene from both parents who are just “carriers” but don’t have EB themselves.
How common is epidermolysis bullosa?
The exact prevalence of epidermolysis bullosa simplex is unknown, but this condition is estimated to affect 1 in 30,000 to 50,000 people. The localized type is the most common form of the condition.
Is EB a disability?
A fact sheet you can download and print, which provides information about Epidermolysis Bullosa disease, its types, the signs and symptoms, treatment and tips for additional comfort. This disease is a disability type-specific to section 24 of the NDIS Act.
Is EB contagious?
EB is not contagious, it is a genetic (inherited) skin condition.
What part of the body does epidermolysis bullosa affect?
This results in painful sores and blisters. The blistering can also occur in the mucous membranes inside the body, such as in the mouth and esophagus. Sometimes, this makes it almost impossible to eat solids. EB can also affect the urinary tract and bladder, making it painful to urinate.
How does epidermolysis bullosa affect the body?
Severe cases of EB can result in vision loss (if blisters in the eye occur). Severe disfiguring scars and deformities of the skin/muscles, making it difficult to move fingers, hands, feet, and joints. Some people with EB are at increased risk for developing a type of skin cancer called squamous cell carcinoma.