Tag Archives: facebook

Join us on Facebook

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Many patients with EB have Facebook pages to gather support, prayers and to share their struggles and achievements. My son does as well. I didn’t make it, a dear photographer friend, who is documenting his life, made it for us. I scoured Facebook for other pages and this is the list I came up with.…

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EB wounds offensive to Facebook?

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Apparently the daily life of my son is offensive to Facebook and whoever ‘reported’ this photo to Facebook as a┬áviolation of the statement of rights and responsabilities.┬áHuh? No, this photo isn’t pretty. That’s the point of posting it, isn’t it? To SHOW what EB is really like. To show the suffering EB patients endure. We’ve…

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