Tuesday, October 23, 2012

Raising Awareness for EB- Epidermolysis Bullosa

Epidermolysis Bullosa Awareness Week 
October 25-31

"Epidermolysis Bullosa (EB) is a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause severe blistering—inside and outside the body. Today there is no cure. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability and often early death.There are many patients who are diagnosed with milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal.
The only treatment for EB is daily wound care and bandaging. The daily routine is a grueling, multi-faceted daily regimen. Caregivers, often parents or family members of EB children, must work in tandem with medical professionals to determine and administer different treatment methods to care for EB wounds.
With skin as fragile as a butterfly wing, EB patients are dubbed “Butterfly Children”. On the outside physical wounds prevent them from normal daily activities enjoyed by other children. On the inside, their dreams are the same as any child who loves, plays, learns and grows despite the pain and impediment caused by their disease. With the programs and services of Debra of America, EB’s Butterfly Children and their families find the support they so desperately need. Debra of America works to ensure that a life of struggle is also a life of hope for the 1 out of every 50,000 live births in the United States affected by EB." Learn more at www.debra.org

EB is pretty much the exact opposite of what Evan has. Evan's skin grows at an excessive rate and requires consistent exfoliation and moisturizing to prevent a tight crippling armor. The slightest friction to someone affected with EB can cause that skin to blister, leaving open painful wounds. It is a vicious skin condition that needs more advocates to help promote awareness.

I was oblivious to the variety and the severity of skin disorders and diseases that existed before Evan was born. A week after his birth, the National Geographic Channel aired the show Extraordinary Humans: Skin. The episode focussed on two individuals who were living with a severe, life threatening skin condition. My husband and I were anxious to see this show since one of the individuals was affected with Harlequin Ichthyosis (I wrote about that in an earlier post here). What a coincidence it was to gain this information so quickly after his birth. The timing could not have been more perfect. But the reason why I bring this up is because the other child interviewed on the show was a young boy with Epidermolysis Bullosa.

I was a bit overwhelmed after seeing what Harlequin Ichthyosis entailed. But once the next story began, my heart began to ache even more. I do remembering saying to my husband, after seeing what a child with a severe form of EB goes through, "Evan has it bad but it could be worse." Learning about these two skin conditions has opened my eyes to not take anything for granted. As much as I did not want my child to suffer with the many challenges he faced, I felt so empathetic for that child with EB. Having a slight idea of what Evan's skin care regimen would entail, I could not imagine spending hours bandaging and cleaning wounds which would endure an enormous amount of pain. To think the slightest touch could be devastating to their skin is heartbreaking; even a kiss or hug.

Fast forwarding about a year and a half, Facebook led me to a mother's story about her son Tripp. From a share of a share this story came up in my feed. Courtney's blog "EB"ing" a Mommy has touched me deeply. I began to read her story about a month before this precious boy went to heaven. She is such a wonderful mother and cared so much for her baby. There has never been a time where I read her blog and did't cry. It has made me truly appreciate everything I have in my life and has made me realize that these severe skin conditions need more awareness so a cure can be found.

EB needs a cure just as much as Ichthyosis does. But in my personal opinion, I hope they find one for EB first. The suffering these children and adults have to go through is horrible. Even when taken care of so gently and carefully, their skin is just too fragile. Those who have severe forms of EB have inner tissues that are just as delicate and require feeding tubes to avoid friction from chewing and swallowing. Everything about it seems so painful. As much as I want a cure for my baby, I know that right now he is happy and 'comfortable'. A cure for those affected with EB is essential. Any donation is a step closer to a cure. DONATE TO HELP CURE EB

Help educate yourself and others by sharing this post or any of the EB related sites in honor of Epidermolysis Bullosa Awareness Week. Here are a few sites, blogs, facebook pages and videos focussing on living with, caring for or educating others about EB.

(Debra) Dystrophic Epidermolysis Bullosa Reasearch Association of America- www.debra.org

EB Awareness- www.ebawareness.com or their Facebook page

I Refuse EB- http://irefuseeb.org or their Facebook page

Courtney and Tripp's story- "EB"ing a Mommy

Support Baby Easton- Support Baby Easton Friedel

The Butterfly Fund- Facebook Page

A video share I found on Support Baby Easton's Facebook page
Video Link



  1. Thank you so much for posting this! my kiddo is in this video and we are so thankful for your help in raising awareness!


  2. also do you know where we can get the same MicroSilk seat that evan is sitting in on this post? I think it would work great for my son. http://ouryoungwarriorevan.blogspot.com/2012/02/raising-awareness-for-rare-disease-day.html

    1. Hi there! I am privileged to help raise awareness for EB and your child. Hope all is well.

      Evan uses a Rifton bath chair. It is a piece of equipment we are borrowing from a rehabilitation facility organized by his physical therapist. They are very expensive if purchased on own. Feel free to email me if you have any other questions. dede583@hotmail.com