NIH Patient Shares Stories of ‘Invisible Illness’

Harper Spero counters “invisible illness” via a
Harper Spero counters “invisible illness” via a podcast called Made Visible.

Harper Spero spent the first 27 years of her life hiding her rare disease from family and friends. Determined to live a normal life, she spent years managing her symptoms while ignoring her doctor’s repeated pleas to seek help at NIH.

After going public with her story 7 years ago, Spero started looking for ways to help others. In July 2018, she launched a weekly podcast featuring people like her, who seem fine on the outside but live with the daily struggles of chronic “invisible illness.”

“I knew of NIH years earlier but didn’t want to be a specimen,” said Spero, a business coach and consultant, on the first episode of her podcast series, Made Visible. A turning point came in 2012, when she had to decide whether to have life-threatening surgery. “At that time, I instinctively knew that going to NIH was exactly what I needed to do.”

A native New Yorker, Spero had started an exciting new PR job when she began to get easily winded. A visit to a pulmonologist revealed a cyst the size of a golf ball in her lung. Now she needed another medical opinion. The required surgery would be especially risky given her immunodeficiency disease.

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Exhibit in CRC Reveals Flower Genome, Art of Science

“Coloured Tulip Genome” is on display in the CC.
“Coloured Tulip Genome” is on display in the CC.

The more no’s she heard, the more motivated artist Anna Fine Foer became. Her latest exhibit, which combines art, genomics, history and horticulture, was born essentially of dismissal. Nearly 2 years in the making, “Tulipmania and the Tulip Genome” is now on display in the Clinical Research Center.

“I’ve been inspired by scientific concepts for awhile after watching episodes of NOVA, the [Public Broadcasting Service] show on TV or listening to [WNYC’s] Radiolab or reading articles in the press,” Foer said.

When she learned she’d won the oppor­tunity to show work at NIH, she shared the news with long-time friend and NIH’er Dr. Henry Levin, senior investigator and head of the section on eukaryotic transposable elements in NICHD’s cell regulation and development group.

“I knew immediately that I wanted to collaborate with him,” she said.

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