EB Awareness Week: EB Statistics

EB Statistics

*In the US, 1 out of 50, 000 babies are born with EB.  Worldwide that number drops to 1 out of 17,000.

*Approximately 1/3 of those babies will not live to see their first birthday.  

*Depending on which study you read, 1 out of every 227-352 people are carries of an EB gene (I am pretty sure this includes people who have EB)

*Simplex is the most common form of EB

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Here are some specific statistics about EB here in the US (I was not able to locate worldwide statistics)

The incidence column is the one that estimates number born in a given year. The last official birthrate numbers are form 2009, and that year it was 4,130,665 (2010 and 2011 are not available)

Material is based on the NEBR study population

EB type or subtype:                                                                                        Incidence**

EB (All types and subtypes, including unclassified patients)                              19.60

EBS                                                                                                               10.75
EBS, Localized (formerly Weber- Cockayne)                                                  6.81
EBS, all others                                                                                                3.95

JEB                                                                                                                 2.40
JEB-Herlitz                                                                                                      0.41 
JEB, other                                                                                                       2.04

DDEB                                                                                                             2.86

RDEB                                                                                                             2.04
RDEB, severe generalized (formerly Hallopeau- Siemens)                                0.41

RDEB, all others                                                                                              1.63



So in plain English! There are approximately 4 million babies born in the US each yr. So take the #'s in the Incidence column and multiple by 4 to get the total # of each case of EB for that form:

Total # 19.6x4 = 78.4

EBS- 10.75x4 = 43
JEB- 2.40x4 = 9.6
DDEB- 2.86x4 = 11.44
RDEB- 2.04x4 = 8.16


so of the approximate 78 EB babies born in the US each year, 43 will have some form of simplex, 9-10 will have some form of Junctional, 11-12 will have a form of DDEB and 8-9 will have a form of RDEB.


You can break it down by subtype if you want.


**Incidence of EB births per one million live births (1986-1990)
Fine, Jo-David and Hintner, Helmut. (2008) "Life with Epidermolysis Bullosa (EB): Etilogy, Diagnosis, Multidisciplinary Care and Therapy" Springer-Verlag/Wien, New York.