My son, Jarvis, was born with Netherton syndrome. He was a full term baby but went to the NICU because his skin was red. The doctor at the hospital reached out to Children's National Medical Center in DC to determine the cause of the skin redness and they mentioned ichthyosis. We searched online for ichthyosis and we found that there was a support group online and also an advocacy group called FIRST. The support group recommended reaching out to FIRST. The support group and FIRST have been phenomenal at providing advice for everything we need to take care of Jarvis.

I really want to use this opportunity to thank every single one of you for sharing tips, tricks and experiences in the group. I can’t imagine how I would figure things out without the private Facebook support groups and FIRST. Thank you to all the adults who have been a part of research on anything for ichthyosis. You’re not just only helping the community but you also brighten up our lives. 

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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 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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