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44-Year-Old Woman with Rapid Aging Disease Lives in an 83-Year-Old’s Body

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Her small stature growing up never held Tiffany Wedekind back.

Even now, weighing about 60 lbs. and standing just 4’5″ tall — a size that sometimes has others mistaking the 44-year-old for a kid — she recalls a childhood filled with dancing jazz, tap and ballet; playing softball, basketball and tennis; and performing as a junior high school cheerleader.

“I mean, I essentially looked like a little baby doll,” Wedekind tells PEOPLE in this week’s issue. “I knew very early that something was different about me. But I just wanted to live my life and be like everybody else.”

It would be years before she learned why she wasn’t.

By the time Tiffany reached her 20s, there was no doubt something was seriously wrong. Her hair was falling out, and her teeth were dying.

When her older brother Chad, who also had been small for his age, developed a variety of bone and heart issues, doctors looked deeper and made a startling discovery: Genetic tests diagnosed the siblings with progeria, a rare and fatal rapid-aging disorder, currently affecting 1 in 20 million people worldwide. The disease often kills patients in their teens, and there is no cure.

Tiffany’s condition worsened after her 2010 diagnosis. “I started to struggle when I was in my mid-30s,” she says.

Her ailments now include cardiovascular disease, arthritis and calcifications in her knees that are causing them to painfully degenerate.

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A narrowing aortic valve has Tiffany on constant alert for heart attacks like the one that killed her brother at 39.

“I actually had a nurse tell me a couple years ago, ‘You’re only 42,’ ” she says. “I’m like, ‘Lady, I’m not even supposed to be alive. Don’t go by my age.’

But today Tiffany and her mom, Linda, 73, a retired nurse who has the same milder form of the disease that she passed along to two of her three children through a chance gene mutation, are among the world’s oldest progeria survivors, says Dr. Kim McBride, a geneticist who oversees Tiffany’s care.

(Neither Tiffany’s father, Michael, 75, nor her oldest brother, Todd, 53, tested positive for progeria.)

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