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

I was born with severe epidermolytic ichthyosis (EI) and I just turned 53 a few weeks ago. My whole life has been a challenge but I’m thankful for great parents, two older sisters and a terrific support system. I was told I would never walk, see well visually, talk, be able to attend school etc. Basically, they said if you want to put her in a home we would understand. They chose not to do that and now I am 53, walking, taking (too much), seeing fairly well for my age and can drive a car. I have been blessed and continue to be.

How has FIRST impacted your life?

Support for my parents over the years, new products and research info

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.