EVENT DATE: Sep 13, 2014
Annie Langschultz wrote -
Epidermolysis Bullosa (EB) — The Worst Disease You've Never Heard Of.™
And until this past winter when my beautiful niece Abbie was born with EB, I had never heard of it either.
To spread EB awareness and to raise money for DEBRA (The Dystrophic Epidermolysis Bullosa Research Association of America, which is the only national non-profit dedicated to funding research and providing services and programs for those with EB. You can see more at: http://www.debra.org) I have formed a team to run in the Gulf Beach Half Marathon. The race will take place on Saturday, Spetember 13 along the beautiful beaches of Milford, Connecticut.
Please consider joining my team (to register for the race, click here: http://www.shorelinesharks.com/Events/Gulf_Beach_Half_Marathon.htm), donating to my fundraiser, or simply spreading the awarness of this horrible disease. Every little bit helps, and I thank you for taking the team to read about my fundraiser.
To learn more about EB, please read below...
Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder. 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. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, is often pervasive and debilitating, and is in some cases lethal before the age of 30. There is no treatment or cure. Daily wound care, pain management and protective bandaging are the only options available.
EB affects 1 out of every 20,000 live births and those born with it are often called Butterfly Children because as the analogy goes, their skin is as fragile as the wings of a butterfly. While many who live with the milder forms of EB can lead long and productive lives, the list of manifestations and secondary complications in the more severe forms is long and requires multiple interventions from a range of medical specialists. Those forms of EB result in disfigurement, disability and early death, in some cases in the first few months of life.
Did you know...
- EB affects 1 in 20,000 births.
It occurs in every racial/ethnic group and
affects both genders equally.
- EB kids may have as many as
6 surgeries a year just
to be able to swallow liquids.
- Of the babies born with EB in
2009, 32% are no longer with us. Of the
babies born with EB in 2012, 16% have
succumbed. Over a 5 year study, 73% of those
born with Junctional EB have lost their battle.
- In 2012, debra shipped more
than 200 boxes of supplies, valued at over
$300,000, to families who needed specialized
dressings and wound care products.
- The specialized bandages required
by EB patients can cost over $10,000 per
month. Many insurance companies do
not cover the full cost of bandages.
- There is no treatment or cure.
Daily wound care, pain management and
protective bandaging are the only options