WEST MILFORD, N.J. — Christine Modica of West Milford can tell when it's going to rain hours before the clouds come.
She feels the pressure mounting in her sinuses, leading to a headache so bad she needs to lie down in a quiet room.
It's a talent that 30-year-old Modica could live without, as it's caused by surgery she had 21 years ago to remove part of her skull affected by a rare bone-softening disease.
Modica is one in 34,000 people diagnosed with fibrodysplasia, which causes growths or lesions in one or more bones of the human body.
The side effects can be debilitating, and there are days when she'd rather be in bed. But Modica says she's taken more from the disease than it has from her.
"I don't let it keep me from living my life," said Modica, who last year opened Stag House barbershop on Rock Road with business partner Rachel Israel.
Modica credits her fourth-grade teacher with catching the disease early on.
"I was zoning out and closing off," Modica said, "staring off and not being able to get back."
It was a form of seizure, which a body scan found was caused by a tumor pressing against her optic nerve.
Within a couple of months, Modica had the affected part of her skull surgically removed and replaced with a titanium plate. She lost the peripheral vision from her left eye because of it.
To make matters worse, fibrodysplasia wasn't the only diagnosis for Modica. It was accompanied by McCune-Albright Syndrome, a disorder that affects the bones, skin, and several hormone-producing tissues. She was fully developed by 11 years old.
The disease sometimes goes hand in hand with fibrodysplasia.
Still, Modica says that she's lucky and that she has learned to keep her pain at bay without medication.
"A lot of people get hooked on opiates," the barber said. "People are on disability and can't work."
A woman in her online support group has hardware covering her entire body. There are several kids in it, too.
Modica was once on a business trip when she had an episode. The pain came on slowly, until it hit hard all at once. She was vomiting, couldn't see straight. Her nose hurt. Her eyes hurt. Her entire face was consumed by the pain.
Her business partner — who she says has been fully supportive — knew exactly what to do, and called her an Uber so she could sleep it off at the hotel.
Modica says sipping coffee throughout the day helps. So does a good attitude.
"You can't let one bad thing dictate who you are," she said. "You can't be nervous and take care of yourself."
What breaks her heart most is seeing the moms who keep their girls out of dance classes, fearful they'll become injured.
"Why would you take that away from them?" she said.
"People who have struggled end up stronger. I don't think I'd be quite as brave if it happened today.
"But," she said, "if you don't want something to get in your way, it won't."
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