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


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