By Natalie Homan from In The Cloud Copy
At 41, Tiffany Wedekind, of Columbus, Ohio, has lived much longer than her doctors could have hoped when she was diagnosed with progeria in her 20s. Progeria is a fatal condition that is usually diagnosed in childhood, but Tiffany has probably lived longer than anyone else with the disease (it’s impossible to say for certain as some mild cases may never be diagnosed). Despite the many challenges that progeria has caused for her and her family, Tiffany sees each day as a beautiful opportunity to do and be better, and she intends to live every day she has to the absolute fullest.
What Is Progeria?
Progeria is a very rare genetic disease that affects only one in 20 million people. It causes extremely rapid aging, and typically children are diagnosed with it by age two and only live until their early teens. Those with progeria experience heart problems, hair loss, premature wrinkles, and limited growth. There is no cure for progeria, although medications can help manage some of the symptoms.
Living a Full Life
Tiffany may have progeria, but her friends and family call her “Tenacious Tiff” because she doesn’t let her condition control her present actions or limit what she can do. Tiffany loves to practice yoga, dance, travel, and hang out with friends. She runs a small candle-making venture called “Recycled Karma,” where she sells homemade candles in recycled beer, wine, and liquor bottles.
Tiffany lives her life doing what she loves with the people she loves, and she’s very proud of where she is right now. She says that part of her inspiration to not limit herself comes from her brother, Chad. He passed away in 2011, but his death opened Tiffany’s eyes to the fact that she could have the happiest life she allowed herself.
Siblings with a Rare Disease
Like Tiffany, Chad also had progeria, but nobody realized for quite a while that the children were dealing with anything serious. As kids, they were both very small (at age 11, Chad was about 4 feet tall), but they both participated in every sport they could and did well. Tiffany had some aging spots on her skin, but nothing raised serious alarm until she and Chad were young adults.
While playing basketball, Chad broke his femur, which was very concerning since it’s a very difficult bone to break. At 31, he was diagnosed with a heart condition and had to undergo intensive surgery. As doctor’s examined Chad and his medical records, they finally diagnosed him with progeria. Tiffany’s small size (4ft. 5in.) and the fact that she was losing her teeth led her to be examined and diagnosed with progeria.
Chad passed away in 2011, at the age of 39. Tiffany has defied the odds by not just living, but by staying healthy and active. Tiffany’s doctor says that while she has the genetic mutation that causes progeria, it’s in a slightly different spot than is typical. It’s possible that a study of Tiffany’s genetic makeup could lead to insights into the disease that could be helpful for others.
Looking Forward Without Fear
No one knows how much longer Tiffany will live, but she’s not letting that stop her from going after the things that she wants to achieve in her life. Tiffany says that a positive perspective and a sense of peace with the life she is living allow her to face the hard times and love the good ones. In her own words:
“I really am focused on making a difference and I don’t think that I’ve had my greatest accomplishment yet… I’m just getting started.”
