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Wednesday, February 3, 2010

Rare ailment makes girl, 13, look like she’s 50

Zara Hartshorn has lipodystrophy, which makes her look old before her time

By Michael Inbar contributor

On the inside, Zara Hartshorn is just like any 13-year-old girl — but on the outside she looks middle-aged due to lipodystrophy, a rare condition she inherited from her mother.

For some folks, turning 50 can trigger a midlife crisis. But due to a cruel blow of nature, Zara Hartshorn is forced to deal with it at the tender age of 13.

Though barely a teen, Zara has the appearance of a 50-year-old, something that saps her confidence just when most young people are striving for self-esteem. The Rotherham, England, teen suffers from lipodystrophy, a syndrome that causes the supporting fatty tissue under the skin to crumble even while the skin continues to grow, often at an alarming rate.

The hereditary condition is extremely rare — only about 2,000 people around the world have it — and for Zara, it has devastating social effects.

Zara’s story, profiled on TODAY Monday, revealed a young girl struggling to find a place in the world despite the teasing and taunts of her peers. Because of her condition, Zara resembled a full-grown woman before she turned 10; now, as a teen, she looks older than many of her peers’ parents.

“[They] call me Grandma,” Zara told NBC News.

A family disease
Sadly, lipodystrophy is a family affair for the Hartshorns: Zara’s mother, Tracey, suffers from the same genetic disorder, as do two of Zara’s siblings. But the affects of lipodystrophy are especially pronounced in Zara; at 13, she looks older than her 21-year-old sister Jolene and 16-year-old brother Tommy, though both also have the disease.

Tracey Hartshorn told The Mirror U.K. newspaper that she realized Zara had the disorder when she was barely home from the hospital.

“I’d seen it all before with my other children — the loose skin, the hollow face and the wrinkles around her chin,” Tracey said. “But I’d never seen a case so severe on a baby so young — my heart sank. I felt so guilty, because when she was a baby I knew the pain she would go through later in life, and I knew I had passed the disorder on.”

Even as a toddler, Zara Hartshorn showed the effects of lipodystrophy.

Zara told NBC News she tries to put on a brave front, but in the face of schoolyard taunts, she finds it hard to even get out of bed four days a week. Bus drivers refuse to believe she is 13 and charge her an adult fare; the same happens when she tries to purchase a children’s ticket at a movie theater.

She told the Mirror she does her best to stand up to bullies at school, but fears for her safety.

“If I can run and hide, I answer back, then run away. But most of the time I just have to take it,” she said. “Otherwise, I’m scared they’ll beat me up.”

Zara’s mother also has lipodystrophy, making her appear older than her 40 years.

Fearing the future
Still, Zara has her dreams of what life will be like as an adult. “I want a job; a part-time job in teaching and a part-time job in beauty therapy,” she told NBC.

Mom Tracey, who at 40 also looks older than her years, told NBC her life has been racked with insecurity as a result of her own lipodystrophy. She’s had a string of bad relationships, and her children are the product of several fathers. Zara’s own father plays no part in her life, she said.

It leaves her fearing all the more for Zara’s future.

“I don’t think there’s any way to protect her,” she told NBC. “She’s always going to have somebody somewhere that will be willing to pick fun, ridicule her.”

While there is no cure for lipdystrophy, cosmetic surgery can mitigate some of the effects — but that option is likely too costly for a family that lives on public assistance.

But Zara still hopes that someday she can receive help and live a more normal life. “I feel if I have my face done, it will give me some more confidence,” she said.


© 2010