TYPES OF EB:
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There are 4 EB subtypes:
• Simplex • Junctional • Dystrophic • Kindler Syndrome Within each type there are multiple subsets. The difference among them is the level at which a blister forms within the skin and which particular protein is missing or impaired. Within each subtype, severity can range from mild to severe. |
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EB FAQ
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Q: What is EB?
A: An individual with EB lacks a critical protein that binds the layers of skin together. Without this protein, the skin tears apart, blisters and sheers off, leading to severe pain, disfigurement, and wounds that never heal. Q: How can you get EB? A: Epidermolysis Bullosa is genetic (or autoimmune in rare cases). There are both dominant and recessive types of EB that individuals inherit. Sometimes, EB occurs spontaneously because of a new genetic mutation. Q: How does EB affect the body? |
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A: EB affects the body inside and out. Blisters occur all over the body, as well as in the eyes, mouth, esophagus, and other internal organs. EB causes severe pain, disfigurement, and in too many cases, an early death from an aggressive form of skin cancer.
Q: How common is EB?
A: It is estimated that EB affects at least one in every 50,000 births. EB is not specific to any ethnicity or gender.
Q: Is it contagious ?
A: EB is not contagious. You or your child can play safely with EB children and individuals. Those with EB are more fragile than others but we still love to play like anyone else!
Q: Do individuals with EB require special bandages?
A: Individuals with EB often require special bandages which do not adhere to the skin. Regular band-aids can tear the skin right off the body.
Q: How common is EB?
A: It is estimated that EB affects at least one in every 50,000 births. EB is not specific to any ethnicity or gender.
Q: Is it contagious ?
A: EB is not contagious. You or your child can play safely with EB children and individuals. Those with EB are more fragile than others but we still love to play like anyone else!
Q: Do individuals with EB require special bandages?
A: Individuals with EB often require special bandages which do not adhere to the skin. Regular band-aids can tear the skin right off the body.
Please visit the Family & Caregiver Resources page for more information