Living in the Now Woman with Benjamin Button Condition Silences the Critics

46-year-old Tiffany Wedekind is one of the oldest people living with progeria, a disease that causes rapid aging in children

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.”

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.”

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.

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.

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.

Doctors didn’t properly diagnose Tiffany even after her symptoms raised alarms .

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

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…”

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 

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.”

Facing Challenges With Grace

Growing up, Tiffany experienced the physical and emotional toll of progeria. She faced bullying, medical complications, and the harsh realities of living with a progressive disorder. Yet, she refused to be defined by her condition. “Right now is all we have,” she often says, embodying a philosophy of living fully in the present. Her optimism, even in the face of adversity, has earned her widespread admiration and the nickname "Tenacious Tiffany."

Tiffany's journey has not been without hardships. Progeria has affected her heart and bones, making everyday tasks challenging. However, she focuses on what she can control: her attitude and actions. “You have to find happiness where you are,” she advises others. Her social media presence reflects this ethos, filled with uplifting messages and insights that resonate with people facing their struggles.

Inspiring a Global Community

Tiffany’s story extends far beyond the medical community. She has become a motivational speaker and an advocate for those with rare diseases. Her message emphasizes self-love, resilience, and living without regrets. She engages with an audience far beyond her condition, spreading awareness about progeria and challenging misconceptions about aging and disability.

Her journey underscores the importance of support networks and medical advancements in rare disease research. Organizations like the Cleveland Clinic continue to study progeria, with the hope of finding treatments that can extend and improve the lives of those affected. Tiffany’s longevity offers valuable insights into the progression of the disease and potential factors that might contribute to longer survival.

Redefining Limitations

Tiffany Wedekind’s life is a powerful reminder of the human spirit’s capacity to overcome. Her story redefines what it means to live with limitations, proving that joy and fulfillment are possible even under the most challenging circumstances. Through her courage and tenacity, Tiffany has transformed her personal battle into a global message of hope.

As she continues to inspire others, her legacy extends beyond survival; it is a testament to the resilience of the human spirit. In her own words, “We may not get to choose the challenges we face, but we can choose how we face them.”