HighlightsTiffany Wedekind, 46, is one of the oldest living survivors with progeria.Progeria affects 1 in 20 million, and Tiffany outlived its life expectancy.Known as ‘Tenacious Tiffany,’ she inspires people with her positivity.
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Standing at 4’5” and weighing only 58 pounds, Tiffany is often mistaken for a child. But she hasn’t been shy to respond to those who would use her diagnosis as an insult, saying she “doesn’t think there’s anything wrong with me.”
46-year-old Tiffany Wedekind is one of the oldest people living with progeria, a disease that causes rapid aging in children
As is common withprogeria’s symptoms, Tiffany suffers from cardiovascular disease, arthritis, and calcifications in her knees, causing them to painfully degenerate. She also hides her thinning hair under a wig and wears 3D-printed dentures since losing the roots of her teeth.
Staying true to those words, Tiffany took many jazz, tap, and ballet classes in school. She also played softball and basketball, and performed as a junior high school cheerleader, despite knowing that progeria often takes patients’ lives in their teens.
Doctors didn’t properly diagnose Tiffany even after her symptoms raised alarms
Her hair began to fall out and herteethdeteriorated as she entered her 20s, and yet, still no diagnosis.
It was only when her older brother Chad, who had also been small for his age, developed a variety of bone and heart issues that Tiffany finally got some answers.
As doctors dug deeper into their family’s genetics, they made the appropriate conclusions.
Tiffany, then 38, her brother, and her mother, Linda—who had a milder case—were all diagnosed with progeria. The third Wedekind sibling, Todd, and their father, Michael, tested negative.
Chad died about a year later at the age of 39. Now, a narrowing aortic valve has Tiffany on constant alert for aheart attack—like the one that killed her brother.
While some on the Internet haven’t bothered holding their tongue, Tiffany refuses to let their unkind words affect her
Tiffany has grown quite a following onTikTok, with almost 30K fans watching her content. This attention, however, also attracts haters who have been quite vocal about the creator’s physical appearance.
Some conspiracy theorists have even claimed her condition is a hoax, writing, “Progeria is genetic and present at birth. She has pics as a teenager looking healthy…”
“Ok, well some people should just get over themselves. Although it made for a great laugh,” someone added. “You have such good energy and seems you take life with ease. You’re awesome.”
Even though she isn’t able to enjoy many of the simple daily activities others take for granted, Tiffany has found ways to stay true to her life motto
While the 46-year-old struggles to live the kind of life she desires with “little, simple things that people don’t even bat an eye over,” she hasn’t let that diminish her spirit.
Dr. Kim McBride, a geneticist who oversees Tiffany’s care, told People, “She still has this wonderful, amazing spark, and joie de vivre.”
This spark is why she is known as “Tenacious Tiffany” onInstagram. She also launched her own candle brand in 2004 and expanded her business into ayogaand art collective named Wanderlust Studio.
“There’s so many people that don’t live in the moment,” Tiffany said. “Right now is all we have. I just really want people to appreciate it.”
Many of Tiffany’s fans find inspiration in the way she chooses to live
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