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October 25, 2011
Have you heard of EB-Epidermolysis Bullosa? Via Wikipedia, by definition Epidermolysis bullosa (EB) is an inherited connective tissue disease causing blisters in the skin and mucosal membranes, with an incidence of 1/50,000. Its severity ranges from mild to lethal. It is caused by a mutation in the keratin or collagen gene.
As a result, the skin is extremely fragile. Minor mechanical friction or trauma will separate the layers of the skin and form blisters. People with this condition have an increased risk of cancers of the skin, and many will eventually be diagnosed with it as a complication of the chronic damage done to the skin.
I had never even heard of EB until I came across the blog of Courtney Roth, “EB”ing A Mommy. Courtney is the mother of Tripp, an absolute angel who has one of the more severe forms of EB, Junctional Epidermolysis Bullosa. Tripp has to live every day with the painful aspects of EB. He has to be constantly bandaged, fed via tube, and breathes via a ventilator-just to name a few of the symptoms the poor guy faces. His mother is his very dedicated and loving 24 hour a day caregiver, and I am blown away by their strength.
Courtney has been steadfast in her dedication to Tripp and to helping raise awareness and finding a cure for EB. She has never asked her readers for any help for herself, just for helping to do something to fight this awful illness. October 25-31 is EB Awareness Week, and we here at PersonalizedFree.com wanted to do something to help the cause. There are several different ways you can get involved in raising awareness for EB. Via Courtney’s blog:
“EB” a part of the Cure by joining the Facebook page HERE.
Create your own awareness page.
Post about EB on your Facebook page or blog.
Share the awareness video at the end of this post.
Educate yourself about EB (Debra.org is a great way).
Simply tell another person about EB.
Educate your children about EB so that they will be able to recognize it.
We’ve also come up with one more way. From now until Christmas, we’ve given Tripp his very own promo code- “TRIPP”. We will donate 10% of the purchase price of every single personalized Christmas ornament purchased with this code to DebRA.org to help raise awareness for EB and fund research for a cure. It’s a win-win situation-you can get some goodies for your tree and potentially help save lives in the process. Also feel free to head over to “EB”ing A Mommy and give Courtney and Tripp some love-we want them to know they are not alone!!