At 24, Hunter Steinitz believed to be oldest US woman living with rare genetic disorder
by Pittsburgh Theological Seminary | Special to Presbyterian News Service
LOUISVILLE — Having participated in Pittsburgh Theological Seminary’s Miller Summer Youth Institute in 2012, Hunter Steinitz started her master’s studies at the seminary this fall.
Her doing so is somewhat of a miracle. At 24 years old, Steinitz is believed to be the oldest woman living with Harlequin ichthyosis in the United States — and one of only about 20 in the country and 100 worldwide. “Just by continuing to survive, I’m making history every day,” she said. “It’s a bizarre feeling.”
A rare, non-communicable genetic disorder, and one that few newborns survive past infancy, Harlequin ichthyosis causes the overproduction of skin cells, which leaves the skin porous and prone to infection.
When Steinitz was born, fewer than five babies suffering from the disorder were known to be living. Her mother, Patti, became a leading advocate for her daughter through volunteer involvement with the Foundation for Ichthyosis and Related Skin Types (FIRST). But Patti, a police officer in Pittsburgh, died from pancreatic cancer when Hunter was barely 17.
The next summer Steinitz attended SYI. “That experience helped me discern what God was calling me to do and who God was calling me to be,” she said.
Part of that discernment process confirmed the importance of her mother’s advocacy for her. “My mother helped educate people about this most-often fatal disorder,” Steinitz said. “I wanted to continue doing that, and so did my dad.”
They began participating in the touring concert, “Release the Butterfly,” a show that raises awareness and funds for FIRST. For the next four years and onward, Hunter performed in the show, which combines music, art and education, and her dad helped with logistics.
While she was participating in concerts, Steinitz was enrolled at Westminster College in New Wilmington, Pa., where she wrote and produced the play “Not Drawn to Scale” to foster understanding of what she and others affected with ichthyosis endure. The four performances of the play included a monologue by Steinitz playing herself — a monologue that ended with a statement recalling her mother’s encouragement of fortitude as Steinitz interacts with others: “I don’t care if you stare at me. I do care if you look away.”
In January, “Not Drawn to Scale” was recognized as a regional semifinalist in the Kennedy Center American College Theater Festival New Playwright’s Program.
But Steinitz wasn’t finished telling her story after producing the play and graduating from Westminster last May.
“God gave me a story to tell and the tools to tell it,” she said, and she’s expanding her opportunities to do just that at Pittsburgh Seminary, where through SYI she had started discerning her call into ministry. As a master’s student preparing for a unique call that fosters understanding and compassion, Steinitz says she has found the Seminary a welcoming environment in which to learn more about God, about others, and about the unique gifts and opportunities God has given to everybody.
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