Tenacious Tiffany inspires people of all ages to enjoy life.
Tiffany Wedekind – also known as Tenacious Tiffany – is a 4’5” force of energy and enthusiasm. She and multiple relatives have the rare, fatal genetic disorder called “progeria” – which causes rapid aging. But she’s not letting that stand in the way of loving life.
Tiffany enjoyed an active childhood, participating in dance, sports, cheerleading, Girl Scouts and more. She was spunky and small – and she knew she was different. “People have been staring at me my whole life, like I’m a baby doll,” she said. “Most of the time, they smile. I smile back, and they can feel my positive energy.”
Tiffany had problems with her teeth when she was young, and when puberty hit, she noticed her facial features changing. In her 20s, she started losing her hair and had ongoing issues with her teeth.
Progeria diagnosis
Her older brother, Chad, was also small in stature. He suffered from multiple broken bones in early adulthood and needed open heart surgery at age 30. Genetic testing revealed Chad, Tiffany and their mom had progeria, which affects 1 in 20 million people worldwide. While medicine can slow the disease progression, there is no cure.
Tiffany, her mom and brother were all diagnosed with progeria.
“Mom had a less severe type of progeria and flew under the radar,” Tiffany said. “Most people with progeria don’t live long enough to reproduce, but she did. She died last year at age 75.”
Diagnosed with progeria in 2010 at age 31, around the time Chad died of a heart attack at 39, Tiffany used it as a turning point in her life. “The diagnosis didn’t devastate me; I was grateful to have my questions answered,” she explained. “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.”
Embracing life
Tiffany joined social media platforms in 2017, but she didn’t mention progeria. “My friend said I should include it, so I did it for the greater good,” Tiffany said. “Within a few days, a United Kingdom media company contacted me about an interview.”
Since then, Tiffany’s life has been in high gear. She owns an art and candle shop on the south side of Columbus. She’s been featured in People magazine and has met celebrities including Shaquille O’Neal and many other amazing people. A book and documentary projects about her are underway. She loves connecting with people, building her Tenacious Tiffany brand and collaborating with other business owners to promote products. She raises awareness of progeria and the Progeria Research Foundation, while encouraging people to embrace life as an adventure.
Tiffany recently met a new friend at Gatorland.
Tiffany lost her teeth and hair. She has arthritis and likely faces aortic valve replacement surgery to improve blood flow from her heart. “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,” Tiffany said with 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.”
Learn from Tiffany Feb. 28 at the Rare Disease Day Conference
Tiffany will be the virtual keynote speaker Feb. 28 at the third annual Akron Children’s Rare Disease Day conference. Sponsored by the Akron Children’s Genetic Center, the event is open to clinicians, community members and Akron Children’s patient families. Online and in-person options are available. Registration will be accepted through Feb. 14. Learn more and register here.
“If you’re different, I’m your cheerleader,” Tiffany said. “Whether it’s a rare disease or other factor, we all have challenges in life. I want to encourage you to live in the moment and pursue the things that make you happy.”
