

"Take the words for what they are: A dwindling, mercurial high...
...A drug that only works the first few hundred times" -Taylor Swift Toxic positivity – what an interesting term. Wait, hold up…...
Aug 5, 20215 min read
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Happy Rare Disease Awareness Day!
Today is Rare Disease Awareness Day. I hope you have learned a bit more about the rare disease of Epidermolysis Bullosa and how it...
Feb 28, 20212 min read
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Rare Disease Awareness - Post 6
Other random tidbits and facts about Epidermolysis Bullosa (EB) So far I’ve tried to share some of the major characteristics and...
Feb 27, 20215 min read
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Rare Disease Awareness - Post 5
It takes a village. I’m sure you’ve all heard the African proverb that it takes a village to raise a child. I couldn’t agree more. What I...
Feb 26, 20213 min read
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Rare Disease Awareness - Day 4
Over the meadow and through the woods, from blisters to wounds we go. If you’ve been following along on our journey this week regarding...
Feb 25, 20213 min read
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Rare Disease Awareness - Post 3
Fingernails and toenails goodbye? OH MY! Baby hands and baby feet ....they are the cutest little things, aren’t they? The sheer miniature...
Feb 24, 20212 min read
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Rare Disease Awareness - Post 2
Blisters. If we break down the meaning of the 2 words Epidermolysis Bullosa we get epidermis (which is the outermost layer of the skin)...
Feb 23, 20212 min read
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