This week is INTERNATIONAL EB AWARENESS WEEK (October 25-31)
AND JUST WHAT IS EPIDERMOLYSIS BULLOSA?
Epidermolysis Bullosa, commonly known as EB, is a genetic condition characterized by the presence of extremely fragile skin – so fragile that the slightest touch can result in painful blisters and open wounds and in some forms much worse. Skin is affected by simple changes in weather, too much activity in one day (running, walking, playing with toys), everyday heat, perspiration, friction, & even minor chafing from the seams or tags in clothing.
With EB, life’s normal activities cause blisters similar to the pain of 2nd or 3rd degree burns. EB is not contagious. It affects both genders, and occurs in every racial and ethnic group throughout the world. One in 50,000 live births are affected by EB and due to the delicacy of the skin it can be called Butterfly Children or Cotton Wool Children. The reason for this is because there is a lack of protein in the skin (which is like a glue that holds the skin layers together). So far there is no cure for EB!
I have personally been affected by this condition as well as some of my immediate family, both my sons (6yrs & 3yrs) are affected with this condition and yet they are so brave, courageous and determined to keep going. Some people would not even notice, because most of the skin that is affected is under their clothing… But our reality is most nights we have to use needles to burst blisters and gently apply pressure to drain them, use ointments & bandages to care for them. It's is an extremely painful process for them and a very emotional journey for our family. We are not just mum & dad to our kids but have become doctors & nurses.
We are very thankful for organizations like DEBRA who are spearheading research and trials to discover a cure / breakthrough so that people suffering from this condition can find healing and also hope!
And thankful to family and friends (our church family) for support, encouragement & prayers… And especially to Jesus Christ who is our strength when we are weak!
I write this not for sympathy but to raise awareness & to speak out for those who have no voice.
#epidermolysisbullosa #ebawareness #ebawarenessweek
I am well aware that there are many people in our world who are affected by this condition or maybe some sort of other condition or ailment. My hope is to bring hope, strength and add dignity to people going through a tough season. If you are reading this and you are a parent of a child with some sort of condition, I just wanted to encourage you and say that you are doing better than you think you are doing, and what you are doing is all worth it. Keep strong in the grace of God, and allow His peace to rule your heart and mind in Christ.
Hillsong Burwood Extension Pastor