Guide for new parents of an EB baby

A guide for new parents of an EB baby

If you are the parent, relative or friend of a new EB baby, 

this site provides lots of information that will be 

helpful in the first few days, weeks and months of life.



What is EB?

Epidermolysis Bullosa, or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). 

There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. The list of complications and secondary illnesses can be long and requires multiple interventions from a range of medical specialists. EB affects all genders and racial and ethnic groups equally. 

There is no treatment or cure, but researchers are making tremendous strides in developing therapies. The current standard of care is supportive, which includes daily wound care, pain management, and protective bandaging. 

There are 4 major types —EB simplex (EBS), junctional EB (JEB), dystrophic EB (DEB), and Kindler. On this page, you will find information on the 4 major EB types and their associated subtypes. 

Essentially, someone with EB is missing the "glue" that holds the skin together. By doing a biopsy, doctors are able to determine which "glue" a person is missing and therefore tell what type of EB they have.

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Here you can find information on the day to day care 
of an EB baby and some answers to 
many frequently asked questions.


To locate helpful tips for EB patients in the 
hospital, click here. 


The do’s and don’t's when it comes to an 
EB baby in the hospital. 


For information on wound care, and wound care products.

To become aware of possible secondary complications 
that can accompany EB.


Information on EB related infections and 
tips on overcoming them


EB friendly baby products and gear


Click here to learn more about developmental issues, 
such as walking and crawling; EB and the eyes; 
sleeping issues; and dental care.

 

To learn more about acid reflux and how it 
can cause complications in some with EB.

 

The genetics of EB  


To locate on-line support groups and other EB 
organizations that provide support, promote
awareness and educate others, click here. 



  To learn more about me and how EB 
affects my life, click here.  



To visit my Garden of Angels, a place to honor those 
who lost their brave battle to EB, click here.  





To learn about SSI and Disibility and where to apply  



Airway Issue in EB  



EB and Circumcision