People got a glimpse of a rare genetic disease in the hit movie “The Curious Case of Benjamin Button,” starring Brad Pitt, where his character ages backward. In real life, however, there is a disease called progeria, which causes kids to age rapidly despite seeming normal at birth.
Progeria, or the Hutchinson-Gilford progeria syndrome, is a rare, progressive genetic disorder often diagnosed within a child’s first two years. It is rarely talked about because it affects a small minority of the world’s population. In fact, to date, only about 350 people have been diagnosed with it.
Often, children diagnosed with progeria in their early years don’t live long, with a life expectancy of up to 12 years old. For Tiffany Wedekind, it wasn’t until she was in her 20s that she was diagnosed with progeria, and she has led an inspired life since.
How Has Progeria Affected Tiffany Wedekind?
Wedekind’s mom, Linda, carries the gene that gave her the condition. Her brother, Chad, passed away from the same disease at 39. Wedekind’s family fears she’ll suffer the same fate as her brother. She suffers from hair loss, tooth decay, and heart problems.
However, her positive outlook motivates her family to stay strong. Linda is proud of how her daughter has steered her life. Wedekind weighs only 26 kilograms and is 4’5″ tall, and despite her health complications, she tries to live life to the fullest.
Wedekind is a businesswoman with a candle-making and jewelry store, as well as a cleaning company. She enjoys practicing yoga and chooses not to let her disease define her, saying:
“That’s not who I am – I just happen to have this, which makes me special in a way. When my brother died, it really opened my eyes to what the rest of my life could be like.”
Those in the medical field are amazed at Wedekind’s case. A clinical geneticist named Dr. McBride put the Wedekinds in contact with researchers so doctors could study their genes.
“To have Ms. Wedekind at her age is remarkable,” he admitted. She may be the oldest living person with progeria in the world.
Growing Up With Progeria
The Wedekinds, particularly Tiffany, Linda, and Chad, donated their DNA to science through the Progeria Foundation, so doctors could find a cure and hopefully save lives.
Growing up, the Wedekind siblings realized they were different from their peers. They were much smaller than other kids their age, but they never noticed it.
Despite being in her late 40s, Wedekind has the body of someone twice her age. She’s beaten all odds, including the longevity of someone with progeria, and hopes to inspire others.
Rather than sulking about her diagnosis, Wedekind has made the most out of the life given to her. Complaining and making things worse for herself was never part of the plan – instead, she focuses on things she can control.
Aside from staying busy with her businesses, dancing, and yoga, Wedekind is conscious about what she consumes. She eats right and surrounds herself with positive people to keep her energy going.
“What an amazing woman! Her outlook and positivity inspire me. All the best to her,” one user wrote. “She seems like one of the sweetest people ever and I love her outlook on everything! What a lovely lady,” another echoed.