“I Was Made a Masterpiece” FRAME Film

A Children’s House for the Soul is excited to announce the premiere of a new short film featuring many of our non-profit’s families entitled “I Was Made A Masterpiece.” Created by Rick Guidotti of Positive Exposure alongside production team Vacant Light, the short film is intended to educate current and future medical professionals, educators, students and ultimately the greater community on the deep emotional impact of skin disease.

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Scleroderma diagnosis by age

When your child is diagnosed with Scleroderma, you’ll likely need to explain the disease to not only your child as they grow up but also siblings, cousins, friends, and acquaintances. We’d like to break down some examples of age appropriate ways to explain Scleroderma.

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This is me: Vitiligo Awareness

I was diagnosed with vitiligo at the age of seven, and I am now thirty years old. Most of my life I have had vitiligo, which is a skin condition that causes a loss of pigment from areas of the skin, leaving white patches all over the skin.

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On the other side of the diagnosis

Fear, heartache, worry, isolation, sadness: all of these feelings and questions about the future come with a new diagnosis or treatment. Our instinct is to just smile and tell our kids it will be ok—that they will be fine.

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Vitiligo diagnosis by age

When your child is diagnosed with Ichthyosis, you’ll likely need to explain the disease to not only your child as they grow up but also siblings, cousins, friends, and acquaintances. We’d like to break down some examples of age appropriate ways to explain Ichthyosis.

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Have a skin picker?

Does your child have issues resisting the urge to pick at their own skin? If so making a tape doll may help! First, take a doll or toy and cover it in layers of invisible tape — this can be scotch or packing tape. Then, encourage your child to pick at the doll’s tape “skin” instead of at their own. You can layer the tape depending on your child’s age and capability to add or decrease difficulty. ⠀

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Incentives and bribes are not the same

It can sometimes be hard to discern between incentivizing your child for meeting expectations and bribing them into those behaviors, but Lindsay, our Director of Community Engagement, explains how parents and caretakers can find their footing.⠀

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3 ways I respond when people stare at my skin

To be honest, I have spent most of my life ignoring the comments and stares, but I have found that it is better to speak up. Speaking up helps that person learn something new and hopefully the next time he or she sees someone with something different about them, they will react a bit better.

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