Jude Voignier Thornton and anyone else wanting something to share about Brody and EB. Brody Curtis was born on May 24, 2011 with a very rare, serious, and life threatening skin condition called RDEB (Recessive Dystrophic Epidermolysis Bullosa), or just EB for short. Brody is missing Collagen VII, the protein in his skin that holds it together. When he was born, Brody was missing skin on his arms, hands, legs, and feet. The slightest amount of friction against his skin causes it to either form painful blisters or come off altogether. Children born with EB are called “Butterfly Children” because their skin is as fragile as butterfly wings. Because of this, Brody must be wrapped from the neck down in bandages to help protect his skin from wounds and infections and bandages must be changed 3-4 times a week. These bandage changes can take between 3-4 hours. EB can also affect other areas such as the eyes and internally such as the mouth, esophagus, stomach, intestine, upper airway, etc. There are several main forms of EB and then many subtypes of each form. Brody’s type, RDEB, is considered one of the most severe forms. The structural weakness in the skin is in a deeper layer resulting in deep sores and extreme scarring and can cause deformities of the body, such as webbing of the fingers or “mittening” of the hands. Approximately 1 in a million are born with RDEB. Of those that are born with RDEB, there is a 10% chance they will die before they are 10, 40% chance before they are 20, and 70% chance before they are 30. Many doctor’s appointments are required for Brody at Cincinnati Children’s Hospital. Brody must also take many medications. These things along with the bandage materials he needs are all very expensive. At this time, there is no cure for EB. Please share this story and help spread awareness for EB. National EB Awareness week is Oct 25-Oct 31. You can visit Blessings for Brody on Facebook, debra.org or irefuseeb.org for more information.
Posted on: Sun, 26 Oct 2014 14:37:08 +0000
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