Special Needs Spotlight – Epidermolysis Bullosa(EB)

What is Epidermolysis Bullosa or EB?

EB is a genetic skin condition in which the proteins that bind the skin together are missing.  This leads to the skin being easily blister or rub off.  It may also affect mucus membranes and internal organs.  There are four kinds of EB.  Please read more about each kind below.

Epidermolysis bullosa simplex

Junctional epidermolysis bullosa

Dystrophic epidermolysis bullosa

Kindler syndrome

Is EB curable?

At this time it is not curable, but it is manageable.   Please visit the following sites for more information.

EB Research

EB Research’s Mission

EB Research Partnership is the largest nonprofit funding research aimed at treating and ultimately curing Epidermolysis Bullosa, a group of devastating and life-threatening skin disorders that affect children from birth.

EBRP works to treat and cure EB as quickly and efficiently as possible, fulfilling our mission through partnerships with non-profit and for-profit organizations, foundations, individual donors, and the EB and research communities.

Leading researchers say treatments and a cure for EB are within reach. Though we have made significant progress, we need much greater resources in our pursuit of a cure.

https://www.ebresearch.org/

DEBRA

Debra’s Mission

“Because the cost of doing nothing is too great” is an axiom that defines our mission and directs all of debra of America’s actions as an organization. We are dedicated to improving the quality of life for all people living with EB. 

To achieve this, we do two things in parallel: we provide free programs and services to the EB Community in the United States and fund the most innovative research directed at symptom relief and a systemic cure.

https://www.debra.org/

​Living with EB

Stanford University has put together a nice resource page for living with EB.  Check them out as they cover everything from where to buy supplies, treat wounds, and even have options for children to attend camps.

https://med.stanford.edu/dermatology/resources/gsdc/eb_clinic/eb-resources.html

Please read this little blog post about children living with EB.

http://littleflowerprojects.blogspot.com/2012/04/long-hard-road-with-eb.html

Our Recommendations

If you are considering adoption a child with EB, we strongly encourage you to get involved early with the EB community.  Find support groups.  Attend meetings.  Talk to doctors and other professionals who treat the disease.  And most importantly, talk to people with EB.  Learn from them.  Each case of EB is unique to the person.  What works from one person, may not work for another.

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