Of these, less than 300 have the same form of EB that I was born with. (Recessive Dystrophic - Hallopeau Siemens Epidermolysis Bullosa.) Only one in a million babies are born with the Recessive Dystrophic form of EB (RDEB). I prefer to say I'm one in a million  :o)

Epidermolysis Bullosa, or EB for short, is the name given to a group of rare genetic blistering skin disorders. EB causes the skin to be so fragile that even minor rubbing can cause blistering. In severe EB, daily bandage changing is required to treat the many open wounds and blisters. EB can also effect other areas such as the eyes and internally such as the mouth, esophagus, stomach, intestines, upper airway, bladder, and genitals. The skin is made up of many layers.

Most people with EB have inherited the condition through genes they have received from one or both parents. The faulty genes cause structural abnormalities in the skin. Genes govern the formation of different types of protein in the skin, including collagen and keratin. When any of these proteins is bad, the skin becomes so fragile it can literally fall apart.

Some forms of EB are dominant, some are recessive and some are spontaneous mutations (abnormal changes in a gene that occurred during the formation of the egg or sperm) In dominant forms of EB, the disease gene is inherited from only one parent who has the disease and there is a 50% chance with each pregnancy the baby will have EB. In the recessive forms, the disease gene is inherited from both parents. Neither parent shows signs of the disease, they are just carriers of the EB gene.

By doing a skin biopsy (taking a small sample of skin and examining it under a microscope), a dermatologist can identify where the skin separation occurs and what form of EB the person has. One diagnostic test involves use of a microscope and reflected light to see if proteins needed for forming connecting fibrals, filaments or hemidesmosomes are missing or reduced in number.

There is currently no cure for EB. At this time the best hope is gene therapy. In 1993 the gene that causes Dystrophic EB was located. That was the first major step. More advances are being made every year giving much hope for the future. Scientists are currently testing the delivery of modified cells to genetically altered mice that have EB traits.

In 1886, Kobner introduced the name epidermolysis bullosa hereditaria to describe a multigeneration affected family with mildly generalized, predominantly acral, serous blistering. This name is still widely used today. During the end of the nineteenth and beginning of the twentieth centuries, other famous dermatologists, including Brocq and Hallopeau, continued to group these patients under such terms as congenital traumatic pemphigus, congenital traumatic blistering, or acantholysis bullosa.

There are currently only two types of EB that are considered lethal. The first is Junctional Herlitz, which is often deadly to newborns. Junctional Herlitz effects internally, including the airway and other internal organs causing major complications. Many with this form pass away within a few weeks of birth.  The other form is RDEB-HS (the kind I have).

Thankyou for taking the time to learn about Epidermolysis Bullosa. Please help spread awareness and pass this site onto others. No, not at all, in fact most with EB excel in school. EB children can be mainstreamed into regular classes with the other kids. Some severe forms of EB cause the person/child to look much younger than they actually are, however don't let this fool you! In some forms of EB the skin does get better with age, in some cases dramatically better.

In 1999, there were 58,476 deaths due to heart disease in California. This was 26 percent of the total number of deaths from all causes.

The problem is over-pronation: therefore the patient should be fitted with custom orthotics and proper footwear. Recovery can be expected to occur over a period of months. Orthotics will not cause the physical deformity to regress, but will arrest any further progression and likely stop the pain. It is important to note that when the bunion is severe and requires surgery, the bunion can be corrected, but will re-develop unless the root cause of over-pronation is corrected.

many as 1 in 150 children are autistic, according to the Centers for Disease Control. That adds up to almost 1.5 million people in the United States. Also, government statistics suggest the rate of autism is rising 10-17 percent annually. Unfortunately, the numbers appear to be continuing their upward climb.

Very common. One in six New Zealanders will experience depression at some time in their lives. It is most common in 16-24 year olds, but can happen at any age.

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VRE was not reported in U.S. hospitals until 1989. Data reported to the Centers for Disease Control and Prevention during 2004 showed that VRE caused about 1 of every 3 infections in hospital intensive care units.

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society has attached a stigma to the discussion of bowels and bowel habits, many people seem embarrassed or unwilling to discuss what is a comparatively common disease.