Writer finds the words to share about her life with ichthyosis

The checkout lady’s panic surged as she held the coins six inches above my hand and dropped them into my palm. They clanged until I made a fist. She ran her fingernails through her hair.

“What’s wrong with you?” she asked, her voice rising to a higher pitch. I slid the money into a jeans pocket and stroked my thigh to calm down.

“Just dry skin,” I murmured. That wasn’t true.

(An excerpt from “Finding Refuge With the Skin I’m In”)

When reading the opening of this essay from The New York Times, those of us living with ichthyosis can relate to this type of encounter and the feelings that often accompany it. The reason this resonates so strongly is that the essay was written by Anne Kaier, who is affected with lamellar ichthyosis.

Anne is someone who has been writing since childhood and developed that passion into a career. She has a Ph.D. from Harvard University and taught English literature at both Arcadia University and Rosemont College. She became connected with The New York Times when she reached out to an editor. At that time, they were initiating a series about disabilities and the paper was looking for great writers to share their perspectives. Anne, who is a gifted writer, happened to be at the right place at the right time. In 2016, she wrote “Finding Refuge With the Skin I’m In” for that disability column. Since then, she has written another called “Learning to Sing Again”

When writing about her ichthyosis, Anne recognized it was gong to be hard to remember and face the difficulties again, and she surely didn't want people's pity.

Her essays, as well as others from the disability series of The New York Times, were compiled into an anthology last fall.  It is entitled “About Us: Essays from the Disability Series of The New York Times” and features perspectives from various people with physical differences, viewpoints from their caretakers, politics of the disability movement, and people urging changes in public policy for disabilities. Before the pandemic hit, they were able to hold readings in several cities across the United States. Anne participated in an event in Philadelphia, where she lives. About 60 people attended, and the books sold out!

Writing about ichthyosis was not something Anne started out doing. It came with time. Growing up in the 50s and 60s, her family didn’t really talk about her skin condition. She has a twin brother who is not affected. Disabilities and physical differences were not something people discussed in mainstream media. And FIRST did not exist yet, so like many families back then, they didn’t have anyone to help them understand ichthyosis or to navigate through the challenges of living in our skin. Around the age of 50, Anne felt ready to begin writing about her experiences with ichthyosis. She knew it would be a challenge to strike a delicate balance – keep the skin disorder from sounding frightening or scary, without sugar-coating the struggles. She recognized it was going to be hard to remember and face the difficulties again, and she surely didn’t want people’s pity. Anne was able to find that balance in her essays for The New York Times. Her words help the non-affected better understand our daily struggles and the affected to acknowledge that sometimes it’s okay to not be okay; that we face challenges daily that impact our lives immensely.

When asked what advice she would have for the next generation of people affected with ichthyosis, she said, “Be yourself. Live your life. You need to be a part of the world, but give yourself a break from it when needed. It’s not always easy and don’t forget, you do not have to be a poster child for ichthyosis. It’s only one aspect of your life. You are so much more.”

Other than writing and teaching, you can find Anne singing in her community choir in Philadelphia or tending her garden. Information about her writing, including her memoir, can be found on her website, www.annekaier.com.

By Bailey Pretak

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed 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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