EB Advocate

Our experience and expertise make us uniquely qualified to support those living with EB and their loved ones.

For patients, families and friends, a diagnosis of Epidermolysis Bullosa carries with it great uncertainty. Click here to learn about EB, its symptoms, treatments, and more.

All about EB

See an overview of what EB is, how it’s inherited & how it’s diagnosed

Resources

All the essentials on wound care, caring for newborns, community tips & helpful  organizations & foundations

Products

Information on exceptional products suitable for EB wounds & skin

Contact the EB Team

EB hotline: 855.5EB.line
EB fax: 877-651-1957
EB email: ebline@adapthealth.com

 

Need EB supplies? Fill out our form.

Name

An EB representative will reach out to you. Your insurance information and physician’s name will be needed.

Helpful Resources & Information

  • What you need to know about Wound care
  • Caring for Newborns

Events:

October 17, 2022 in EB

Camp Spirit Colorado

Camp Spirit Colorado is a winter adventure camp for children with one of the most severe forms of EB, Recessive…
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October 17, 2022 in EB

#GivingTuesday -November 29, 2022

#GivingTuesday is a global day of giving, fueled by the power of social media, that aims to inspire people across…
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October 17, 2022 in EB

EB Awareness Week -October 25-31

October 25-31, 2022 -National Epidermolysis Bullosa Awareness Week is a time to increase awareness of EB, promote the need for…
Read More
 

What is EB?

EB is a genetic disorder that results in fragility of the skin and, in some cases, other organs. Blisters and/or erosions form as a result of rubbing, trauma or even a simple hug. In some instances of EB, blisters and/or erosions occur spontaneously.

There is no cure for EB. There is only daily wound care, which can be excruciatingly painful and last for several hours. Genetic research and clinical trials are ongoing to find more effective treatments.

Blisters and erosions occur when layers of the skin fail to properly adhere. Normally, the outer layer of the skin, the epidermis, adheres to the deeper layer of skin, the dermis, through the interaction of proteins that form specific microscopic skin structures, including anchoring fibrils, intermediate filaments and hemidesmosomes. Some of these structures are in the middle layer of skin, which sometimes is called the “junction.”

The three major types of EB are defined by the location of the blister in the skin:

A fourth type of EB, known as Kindler syndrome, is classified as “mixed” because blisters may occur at any level: in the epidermis (intraepidermal), within the lamina lucida (junctional) and below the lamina densa (dermal).

Further classification of EB types depends on the mode of inheritance (dominant versus recessive); appearance and localization of blisters and erosions; and absence or presence and degree of severity of additional clinical features, such as nail dystrophy and involvement of internal organs such as the esophagus and trachea.

In general, it may be impossible to predict the subtype of EB in a newborn or infant suspected of having EB based on clinical features alone. Skin biopsy for electron microscopy and immunoepitope mapping are the first steps in the diagnosis of EB. These methods usually can suggest the subtype of EB. Immunoepitope mapping allows for more precise localization of the blister to the epidermis, dermal-epidermal junction or dermis, and may also allow for identification of the specific protein that is missing or present in reduced quantity.

Definitive diagnosis of the specific subtype of EB generally relies on genetic testing to identify confirmatory mutation(s) in one of the 10 genes associated with EB. In some patients , no genetic mutation can be identified, and it is possible that other genes also result in EB when mutated. In some cases, identification of the involved mutation(s) also can help to predict the severity of blistering and associated complications. As genetic researchers continue to study Epidermolysis Bullosa, more is learned about the disorder and associated findings.

 

Wound Care Products

There are thousands of exceptional wound care products available, and many are suitable for EB wounds and skin. This chart lists product categories and their properties. Click here to learn about the quality products AdaptHealth can provide.

Product Category

Absorption

Fight Infection

Non-Adherence

Protection

Retention

Alginate Dressings

Antimicrobial Dressings

Collagen Dressings

Contact Layer

Foam Dressings

Honey Dressings

Hydrogels

Impregnated Gauze Dressings

Keratin Products

Retention Dressings

Specialty Absorbent Dressings

Tape

Topicals, Ointments & Creams

Get in touch with the EB Team

Call: 855.5EB.line   Send us an email   Fax: 877-651-1957