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Tag: member story

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Christine B’s Story

Meet Christine B. I Knew, Yet I Didn’t Know – My Journey With Ichthyosis Vulgaris Christine Brush At the FIRST’s National Conference...

ichthyosis vulgarismember story

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Jelani H’s Story

Meet Jelani H.  College Graduate Excited About his Future  By Ellen Clemmer Jelani Hedley, a member of FIRST, graduated from...

collegekeratitis ichthyosis deafnessmember story

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Ahmed’s Story

Ahmed’s Story

Meet Ahmed Suffering Children and the Drawers of Happiness* It is 10 km to the school. The place is in...

Diya & Aliya Fundlamellarlamellar storymember story

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Angela L’s Story

Angela L’s Story

Meet Angela L. Loving, and Being Loved, Unconditionally by Angela Lowry-Sellerslamellar ichthyosis I was blessed to be born to two...

lamellarlamellar storymember story

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Meet Our Members

Meet Our Members What’s Your Story? We’d Love to Hear it! Here is your opportunity to get to know our...

member story

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Lori’s Story

Meet Lori – SC A Rare Diagnosis, a Life-Saving Connection A few weeks after Camellia was born in 2017, we...

caregiver storyEKCEKC storymember story

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Eileen’s Story

Eileen’s Story

Meet Eileen – IN Finding Strength Through Early Awareness Eileen’s journey with Chanarin-Dorfman syndrome No more hiding, no more fear...

chanarin-dorfmanchanarin-dorfman storymember story

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Brittni’s Story

Brittni’s Story

Meet Brittni – NY From the NICU to Hope: Lorenzo’s Story I never realized how much we take for granted...

caregiver storycollodioncollodion storymember story

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Tijuana’s Story

Tijuana’s Story

Meet Tijuana – IL I’m learning to LOVE the SKIN I’m IN Sharing these pictures publicly is a form of...

member storypalmoplantar keratodermaPPK story

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Kendra-Ann’s Story

Meet Kendra-Ann W. The Skin I’m In When I was about five or six years old, I remember thinking it...

ichthyosis vulgarismember story

FIRST is dedicated to improving lives and seeking cures for those affected by ichthyosis and related skin types, or epidermal differentiation disorders. FIRST connects patients, caregivers, medical professionals, researchers, and industry partners for support, education, resources, medical access, research, and advocacy.

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Foundation for Ichthyosis & 
Related Skin Types, Inc.

PO Box 1067, Lansdale, PA 19446

(800) 545 - 3286

info@firstskinfoundation.org

EIN: 94-2738019

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Copyright © 2026 Foundation for Ichthyosis & Related Skin Types, Inc.®

This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors nor Foundation staff and officials and sponsoring foundations endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.