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Chronic Conditions

When you’re living a different normal

Connecting With Community

hands joined together

It’s been almost 21 years since I was diagnosed with Marfan syndrome, a rare disorder of the connective tissue that affects most of the body, including the heart, eyes

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Taking Back Summer

woman in the sun

Summer’s finally here, and after the long winter with subzero temps, many people can’t wait to get out and enjoy the

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From Surviving to Thriving

dandelion

My daughter, Brenna, was born with a rare and severe skin condition called Harlequin ichthyosis, which causes her skin

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Fight for Treatment

My 15-year-old son Andy and I both suffer from psoriasis and psoriatic arthritis. Psoriasis is a chronic disease of the immune system that appears as red scaly patches

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Lessons in Strength and Optimism

When someone discovers that I am the Communications Director for FIRST, the Foundation for Ichthyosis & Related Skin Types, typically, I am greeted with the same three questions

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The Joy of Raising a Chronically Ill Child

In the late 1970s, my high school English teacher gave our class an assignment to write an essay about what we wanted to be when we grew up. My female classmates wrote about their aspirations

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