Tenacious Tiffany shines a spotlight on rare diseases

Tiffany Wedekind, also known as Tenacious Tiffany, is a 4’5″ bundle of energy and positivity who inspires people of all ages to embrace life. Despite living with progeria, a rare and fatal genetic condition that causes rapid aging, Tiffany refuses to let it define her. Along with her family, Tiffany’s life has been shaped by this condition, but her vibrant spirit and determination show no signs of slowing down.

Growing up, Tiffany was always active. She danced, played sports, cheered, and participated in Girl Scouts, among other activities. Although she was small and different, she embraced it with spunk and enthusiasm. “People have been staring at me my whole life, like I’m a baby doll,” she recalled. “Most of the time, they smile. I smile back, and they can feel my positive energy.” Tiffany was aware of her unique circumstances and knew she was different, but that never stopped her from enjoying life to the fullest.

As Tiffany entered her teenage years, she began to notice the physical changes that accompanied progeria. She had dental issues and, as she approached her twenties, started losing her hair and seeing changes in her facial features. Her brother, Chad, also dealt with the effects of progeria, experiencing multiple broken bones and needing heart surgery at 30. Sadly, Chad passed away from a heart attack at 39. A genetic test later confirmed that Tiffany, her brother, and their mother all had progeria, which affects only about 1 in 20 million people globally. While treatments can slow the progression of the disease, there is currently no cure.

Despite the difficult diagnosis, Tiffany faced her situation with remarkable resilience. Her mother, who lived until age 75, had a less severe form of progeria and was able to have children, which is a rarity for people with this condition. Tiffany was diagnosed with progeria in 2010 at the age of 31, shortly before Chad’s death. Instead of allowing the diagnosis to crush her, Tiffany saw it as an opportunity to change her life. “The diagnosis didn’t devastate me; I was grateful to have my questions answered,” she said. “Progeria has allowed me to be more aware of my mortality. I wanted to make the most of life, so I got divorced and quit my job. I focused on myself—not in a self-centered way—and didn’t get derailed from my potential and purpose.”

Tiffany’s journey took another major turn when she joined social media in 2017. Initially, she did not mention her condition, but a friend encouraged her to share it for the greater good. Soon after, she was contacted by a media company in the UK, leading to interviews and exposure. Since then, Tiffany’s life has been in full gear. She now owns an art and candle shop on the south side of Columbus, has been featured in People magazine, and has met numerous celebrities, including Shaquille O’Neal. A book and documentary about her life are also in the works. Tiffany is passionate about raising awareness for progeria and the Progeria Research Foundation. Through her social media presence and her “Tenacious Tiffany” brand, she encourages others to embrace life and find joy despite challenges.

Despite the physical challenges progeria brings, Tiffany remains determined and upbeat. She has lost her teeth and hair, suffers from arthritis, and may eventually need aortic valve replacement surgery. Yet, her outlook remains optimistic. “I haven’t embraced my baldness, so I wear a wig. But think about it: When was the last time we saw Dolly Parton’s real hair?! She’s been wearing wigs for decades,” she said with a burst of laughter. “My body can’t keep up with my mind anymore. There’s so much I want to do, but I’m grateful for every day I don’t struggle to get up in the morning. I know what’s coming with my health, but I don’t focus on it. I accept my situation, adapt to it, and control what I can control.”

Tiffany’s inspiring story will be shared at the Rare Disease Day Conference on February 28, where she will be the virtual keynote speaker. The event, hosted by the Akron Children’s Genetic Center, aims to raise awareness for rare diseases and offer support to clinicians, families, and individuals affected by rare conditions. Tiffany hopes her story will encourage others to live in the moment and pursue their happiness, no matter what obstacles life may bring.

“If you’re different, I’m your cheerleader,” Tiffany said. “Whether it’s a rare disease or some other challenge, we all have struggles. I want to encourage you to live in the moment and pursue the things that make you happy.”