My name is Nancy.  When I was born 55 years ago I was “different.” I was hospitalized for four weeks before I went home to my parents, sister, and twin brother, who had normal skin.  My parents took me to a doctor Detroit, Michigan, and were told that I had fish skin and nothing could be done about it. Eight months later, I was taken to the University of Michigan in Ann Arbor, where I was diagnosed with ARCI-lamellar ichthyosis. It affects my entire body with scaly skin, which regenerates after falling off. My oil and sweat glands do not function properly, which means my skin is very dry and I have to constantly use lotions. I cannot perspire, I overheat. I have no visible hair except small patches on my head. (Thank goodness for wigs.)

While in my late teens, I went to the National Institute of Health (NIH) in Bethesda, Maryland, for testing and research. I felt like a guinea pig. In the end it paid off. I found out that my skin condition is genetic, and they found the specific gene that causes it. I also learned about FIRST Foundation for Ichthyosis and Related Skin Types. National conferences are held every two years and through them I meet other people with my skin condition, some better and some just like me. We compare different remedies to control our skin scaling.

Growing up was very difficult. In school I had very few friends. I was constantly being stared at and ridiculed. I just wanted to be normal. I had one friend, Lisa, who would approach a person staring at me and say, “Would you like a picture, it will last longer?” At 19, I started working for the U.S. Small Business Administration. Most of the people there considered me “normal,” but a few were very rude. I retired after 25 years due to medical conditions relating to my skin. I was also getting tired of some of my coworkers constantly making remarks, refusing to sit in a chair, at a desk, or even use the restroom after me.

After an auto accident, I moved from the city of Roseville to the town of Almont. What a difference! The people I encountered would smile at me, pat me on the back, and even hug me. It was a wonderful change of environment! I recently moved to a senior complex in Imlay City, Michigan. I was disappointed that the senior citizens weren’t more compassionate. Several people complained to management about my skin flaking. After my sister and I spoke to the women who complained, and to the manager, I decided to isolate myself from them. As time has passed, I am now playing cards with several of them but I am still cautious.

I lead a normal life. If I could say one thing to people it would be, “If you see someone like me, don’t stare at them. How would you feel with someone constantly staring and pointing at you?”

Nancy
Michigan

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

« Back to Meet Our Families

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.