Sunday, April 28, 2013
There is a local girl that has a horrible disease called Epidermolysis Bullosa, (EB), is a devastating connective tissue disorder that affects 1 in 50,000 live births. It is a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause mild to severe blistering, both inside and outside the body due to a lack of proteins found in the skin. The "glue" is weakened or missing from between the layers of skin. 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 possibly 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. With skin as fragile as a butterfly wing, EB patients are often called "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 plays, learns and grows despite the pain and challenges caused by their disease. Check out the website to find out more or how you can donate. Cure Eb I recently got a cute purple bracelet with a butterfly on it & the $ goes towards eb. They also have pretty purple t-shirts.