Ichthyosis. I had never heard that term before. One word and it changed our lives forever.

Adam was born ten years ago and I can remember that day like it was yesterday. The look and panic in the doctor's eyes, the days of uncertainty, the diagnosis...all so fresh in our memory.

We were scared. We were handed this child to raise. We had no clue and little guidance. It was the scariest time in our lives. We were thrust into this world we never knew existed and at the time, we were pretty sure we didn't want to be.

We went through all the whys until we realized there were no answers. We thought about how our lives were going to be, how much it was going to change. We couldn't imagine what our lives were going to be like with ichthyosis.

And as the years passed, we started to realize that ichthyosis wasn't something to fear or dread. We discovered that living with ichthyosis added much more to our lives than it has taken.

Living with a child affected with epidermolytic ichthyosis has taught us patience, resilience, and strength. Adam teaches the people he meets every day about determination, acceptance, and compassion. Despite everything, Adam has an amazing attitude. The glass is half full in his world and we can all learn from the simple beauty of that.

Not only has Adam brought so much wonder and joy to our lives, but we have the fortune of meeting some of the most wonderful, caring people through our association with FIRST. I always believed angels lived among us, and through the people I have met through this new world we now belong to, I know they do.

I couldn't imagine my life without ichthyosis, as strange as that may sound. It has been the scariest, most challenging, rewarding, amazing experience. And while we will search tirelessly for a cure, I wouldn't change a thing.

Kelly (Adam's mother)
Alpharetta, Georgia

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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.