Monday, June 30, 2008

Domestic Blitz

Just a quick note, last nights Domestic Blitz on telly it was about the Gibson Family. Six year old Joshua has Epidermolysis Bullosa (EB) which is what Megan has. If you didn't see the show you can see the rundown of it here and there is more info on EB found here or here.
There is no cure, it is genetic and the treatment for sufferers is simply to dress and care for the 'wounds' as the skin opens and to fight any infections that may occur.
Megan hasn't had and major blisters for a long time and hasn't had a bandage since she was 18 months old. Megan is just like a 'normal' kid and the doctors are often amazed when we share with them her story. We are still waiting on a 'name' for the EB that she has as the skin biopsies came back inconclusive but we know she has the Dystrophic type due to the scarring. We know what it is like to live day to day with these blisters and it isn't something that we will forget or ever take granted. We know that we are very blessed to have Megan and we want Megan to understand how blessed she is, that it is part of her and if she decides to have kids that this will be a part of the decision process that she will have to go through. Thankful to the Gibson family for opening their home and sharing their story and thankful to Channel 9 for highlighting this genetic disorder. Hoping more people become aware of what it is and that one day there will be more help for families touched by EB.
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1 comment:

  1. vivian1:18 PM

    i didn't see the program, but sounds like a whole lot to deal with. i am admiring your positivity and strength to deal with your situation. take care. xo

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