Tiffany Wedekind is now believed to be one of the oldest living survivors of progeria, more commonly known as rapid aging disease, or Benjamin Button disease. At 46 years old, she has exceeded the average life expectancy by more than 30 years. In her own words, she is “not even supposed to be alive.”
According to the Cleveland Clinic, progeria is a rare genetic disorder affecting 1 in 20 million people worldwide that causes rapid aging within a baby’s first one to two years of life. Their growth slows, they don’t gain weight as expected, and the condition is always fatal, often taking the life of the patient at around 15 years old.
Highlights
- Tiffany 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.
Image credits: tenacioustiffany614
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
Image credits: tenacioustiffany614
As is common with progeria’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.
“I mean, I essentially looked like a little baby doll,” she told People. “I knew very early that something was different about me. But I just wanted to live my life and be like everybody else.”
Image credits: tenacioustiffany614
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
Image credits: tenacioustiffany614
According to the New York Post, Tiffany had to have her teeth pulled out when she was seven years old, as her baby teeth didn’t fall out naturally, and then she wore braces for six years. When she was sixteen, doctors were surprised to find strange white splotches on her skin.
Her hair began to fall out and her teeth deteriorated 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.
Image credits: tenacioustiffany614
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.
Image credits: tenacioustiffany614
Chad died about a year later at the age of 39. Now, a narrowing aortic valve has Tiffany on constant alert for a heart attack—like the one that killed her brother.
“I actually had a nurse tell me a couple years ago, ‘You’re only 42,’” she said. “I’m like ‘Lady, I’m not even supposed to be alive. Don’t go by my age.’”
While some on the Internet haven’t bothered holding their tongue, Tiffany refuses to let their unkind words affect her
Image credits: tenacioustiffany614
Tiffany has grown quite a following on TikTok, with almost 30K fans watching her content. This attention, however, also attracts haters who have been quite vocal about the creator’s physical appearance.
“Glad to see u having fun but ur seriously in need of calories,” someone wrote in the comments, while another said, “You need some cheeseburgers.”
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…”
Image credits: tenacioustiffany614
Without batting an eye, Tiffany responded by simply singing, “One great thing about being an adult — you don’t have to give a sh–t.”
Her fans didn’t hesitate to back her up, with one saying, “These comments made me so mad, so glad you take it and make it silly and positive.”
“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
Image credits: tenacioustiffany614
Image credits: tenacioustiffany614
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” on Instagram. She also launched her own candle brand in 2004 and expanded her business into a yoga and 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
