Most commonly, EB blisters on the skin, but EB can also affect the mouth, esophagus, lungs, muscles , eyes, nails, and teeth. Depending on the type of EB, the effects of the disease can be mild, disabling, or life threatening. EB is never contagious because it is a genetic disease.

How does EB affect everyday life?

For those living with EB , pain represents a constant challenge , with blistering and tasks such as changing dressings, adding to the distress.

Does epidermolysis bullosa go away?

There is no cure for the disease, scientists continue to research possible treatments and cures for EB. Doctors treat the symptoms, which may include managing pain, treating wounds caused by the blisters and tears, and helping the patient to cope with the disease.

What are the risk factors for EB?

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.

What is the new treatment for EB?

Vyjuvek is the gene therapy gel that delivers a healthy copy of the gene, encoding the protein type VII collagen to targeted skin cells. The protein anchors the layers of skin together to promote healing. The drug delivers functional copies of the COL7A1 gene directly to the wound.

How do you treat EB?

Supportive care – There is no specific therapy for most forms of EB. Treatment is largely supportive and includes wound care, control of infection, nutritional support, and prevention and treatment of complication.

What is the most common cause of death in EB?

Monitoring for cancer: Squamous cell carcinoma is the leading cause of death in EB usually occurring after the 2nd decade of life. Patients with RDEB and JEB are at increase risk of developing skin cancers during the lifetime.

Can epidermolysis bullosa be cured?

There is currently no cure for EB , but treatment can help ease and control symptoms. Treatment also aims to avoid skin damage and to improve quality of life.

What foods help EB patients?

Iron, Zinc, Selenium and calcium are particularly important in EB. Iron is mainly found in meat ( liver, kidney and corned beef) bread and fortified breakfast cereals . Iron is needed for healthy blood and prevention of anemia. loss of iron can be significant when skin is fragile and frequently damaged.

Can you live a normal life with EB?

It depends very much on the disease type the EB patient inherited. Some forms are mild and even improve with age, while others are so severe that a child is unlikely to live into adulthood.

How do you diagnose EB?

Performing a skin biopsy and reviewing the tissue sample using special microscopic techniques, which helps doctors identify which layers of the skin are affected and determine the type of EB.

Is EB an autoimmune disease?

Epidermolysis Bullosa Acquisita is extremely rare  , this type of EB differs from the other types. It is thought to be an autoimmune disease which is the person’s immune system mistakes a part of the body as foreign and attacks it.

What is the pain of EB?

The EB patient presents with a number of both acute and chronic pain. Pain and itching are burdensome daily problems.

Can people with EB eat?

Mouth and esophageal areas may also be affected in patients with EB owing to severe blister formation in the oral mucosa, followed by scarring that results in microstomia and ankyloglossia , which severely restrict food ingestion.

Does EB itch?

Yes, as expected, itch is common among patients with EB.

Can EB be diagnosed in the womb?

It is usually is diagnosed in babies and children, or even in an unborn child of parents who are known to carry a disease-causing genetic changes.

What are the major symptoms of EB?

Fragile skin that blisters easily, especially on the palms and feet. – Nails that are thick or unformed. – Blisters inside the mouth and throat. – Scalp blistering and hair loss. – Skin that looks thin. – Tiny pimple-like pumps (millia). – Dental problems such as tooth decay.

What are the complications of EB?

A wide variety of extracutaneous manifestations can develop as well as various complications of the disease such as severe anemia, growth retardation, esophageal stenosis, mutilating deformities of hands and feet, glomerulonephritis leading to chronic renal failure, and many others.

How long can someone live with EB?

In the more severe forms of EB, life expectancy ranges from early infancy to just 30 years of age.

Why is there no cure for EB?

Challenges of EB research, EB is a group of conditions, and because the underlying genetic cause differs from one type of EB to another, with resulting differences in symptoms, severity and prognosis , a variety of treatment strategies are being developed.

How many people in the world have EB?

With a prevalence only about 500,000 people worldwide.

Can people with EB get pregnant?

Although RDEB increases the risk of maternal complications, a patient is not advised against pregnancy. With adequate monitoring these patients can fulfil their desire to become mothers.

What is the pain of EB?

People with EB are often in pain. So many things can cause pain, including the blisters and raw skin , an infection, swallowing , eating, urinating, having a bowel movement, or just moving about. Medication is often needed to relieve the pain