You have just learned that your child may have a form of ichthyosis. Although you may be feeling confused, and even a little scared, you are not alone. FIRST, the leading advocacy organization for ichthyosis has been guiding new parents with children affected with ichthyosis for over thirty-five years.  FIRST’s community consists of families, individuals and medical professionals that are compassionate, knowledgeable and very willing to lend their support. Our medical advisory board is comprised of the top doctors in the field of ichthyosis, and the opportunities to connect with this entire network are plentiful.  

The resources in this section will offer you tried and true best practices of those caretakers that have been in your very same situation, caring for an infant with ichthyosis. Both families and ichthyosis medical experts have helped develop these resources, articles, photos and videos, woven with many real life stories and testimonials. From the first moments in the NICU, to breastfeeding and bonding, to making meals and choosing medications, these resources provide the necessary tools to start your journey with a confident step forward. And always remember, FIRST is available to answer questions along the way.

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The information on these pages has been provided through the generosity of the Ace in the Hole Foundation.

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.

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