Pick a point in your life and write about your challenges or successes.

My great-grandfather became a dermatologist because of his own skin. He passed down this gene to my grandma, who passed it along to my dad. No one had a name for it, and no one really knew what it was. Fast forward 20 years, I was pregnant with my first child. Just for giggles I took the state recommended blood test for fetal abnormalities. A little while later, I got a call from our geneticist saying there was something potentially very wrong with our child and we had low levels of unconjugated estriol. She told me "it could be his skin". Immediately I said "skin?" and told her about my mom`s plaque psoriasis and my own skin issues. It was then when she brought up my dad. Unbelievably to us, we basically got diagnosed with x-linked ichythyosis. After looking at the amnio results we confirmed the diagnosis.  I think our biggest success was finally putting a name to my dad`s skin disease and knowing ahead of time for my son. Right away we were prescribed aquaphor the day he was born and when he was just 5 days old he met his first dermatologist! If it weren`t for that blood test we would have never known how to get the care he needed, and we would have never have had a name to my dad`s condition.

How has FIRST impacted your life?

FIRST was introduced to us at 5 days old. We didn`t know where to start. We went to the 2016 conference and learned a ton about ichthyosis and met other parents. It was good seeing other people that wouldn`t judge us or him. Love FIRST!

What's Your Story? We'd Love to Hear It!




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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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