Tag Archives: support

EB Parent Encouragement

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Having a child with EB is tough. You can survive if you can let attitudes & comments from others roll off you, knowing that your journey as an EB parent is important. You are your child’s voice, their nurse, their advocate but most of all their parent, their heart & soul. YOur journey will be…

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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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