Tiffany Wedekind of Columbus, Ohio, is an exceptionally active person who does lots of yoga, runs her own cleaning service, and has an entrepreneurial venture called “Recycled Karma,” which makes homemade candles in reused bottles from local breweries.
But this 41-year-old has already lived long past what medical science tells us should be her life expectancy. Tiffany and her late brother Chad both were born with an often fatal and untreatable genetic condition called progeria, which provokes early aging. While the average progeria sufferer lives only into their teenage years, Tiffany has shown an incredible capacity to live.
“I’m proud that I’m still here,” she told Columbus Alive. “I’m like a cat with nine lives [and] at this point I’m on my sixth or seventh. So I really am focused on making a difference and I don’t think that I’ve had my greatest accomplishment yet.”
While “Tenacious Tiff,” as she’s known by friends and family, has suffered a great deal due to progeria, including losing her brother Chad, she hasn’t let it get the best of her. “I don’t let my disease define me, that’s not who I am—I just happen to have this, which makes me special in a way,” she told Barcroft TV.
As children, Tiffany and Chad were both shorter and smaller than their peers, yet that never stopped them from being active. They played just about every sport available at their school, including basketball and softball. Besides these sports, Tiffany was also involved with the cheerleading squad and dance group. While there were some strange signs early on, such as aging spots on Tiffany’s skin, the family hadn’t yet realized their condition.
When Chad broke his femur, “the hardest bone in your body to break,” as Tiffany explained to Columbus Alive, it became clear something was up. After his breaking his other femur, he proceeded to get diagnosed with a whole host of other conditions, including heart issues that required triple bypass surgery.
Meanwhile, Tiffany is just 4 feet 5 inches tall, weighing 58 pounds (approx. 26 kg), yet aside from that, there were few symptoms of the diagnosis. “I wasn’t having any complications apart from my teeth falling out,” she shared. Putting it all together, doctors diagnosed her with her brother’s condition, a disease so rare it affects only 1 out of 20 million people, according to the Progeria Research Foundation.
Tiffany and Chad’s doctor, Kim McBride, a geneticist based at the Children’s Hospital in Columbus, has been following the siblings’ condition for the past decade. “When people think about typical progeria, usually you get this image of young children who look they’re in their 60s and 70s, but there are people who probably have milder forms of progeria like this that probably aren’t being recognized,” he said.
Dr. McBride has been inspired by Tiffany’s resilience and hopes that experimental drugs might soon provide options for progeria sufferers. “To have Tiffany at her age is remarkable,” he added.
Sadly, Chad Wedekind passed away due to cardiovascular complications at the age of 39 in 2011. While Tiffany mourned the loss of her brother, it redoubled her resolve to live life to the fullest. “When my brother died, it really opened my eyes to what the rest of my life could be like,” she said. “I love to dance, dance any chance I get and I love hanging out with friends and love to travel.”
Doing lots of exercise and yoga and keeping fit has helped her manage the effects of her condition. While she has experienced hair loss and heart trouble, she told The Epoch Times that she is “very lucky to have such loyal group of rock solid people in my life. It makes life easier to navigate when you are surrounded by love.”
For her mother Linda, who is 70 years old and carries the gene for progeria, seeing her daughter thrive is an inspiration. “Of course, you worry every day. A day doesn’t go by that [losing Tiffany] doesn’t cross my mind, but she has got the right attitude and doesn’t let anything stop her,” she said.
Tiffany adds, “I want people to understand my message that the power of YOU is real. A positive perspective is essential. Life is hard sometimes, but it’s easier if your state of being is at peace. Body mind and spirit!”