• A woman in her 40s ages eight times faster than expected due to a rare disease affecting only one in 50 million people.
  • Tiffany Wedekind discovered her diagnosis in her 20s, despite it usually being diagnosed in childhood.
  • The disease often kills by age 12, but Wedekind has lived through her 40s, thriving and enjoying life as it is.

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People got a glimpse of rare genetic diseases through the hit movie “Benjamin Button” starring Brad Pitt, where he aged backward. While movies often show the most out-of-this-world concepts, there’s a real disease called Progeria affecting hundreds of people worldwide.

Progeria, or the Hutchinson-Gilford progeria syndrome, is a rare, progressive genetic disorder that causes kids to age rapidly despite seeming normal at birth. It is often diagnosed within a child’s first two years.

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Extremely rare genetic diseases like Progeria are barely talked about because they affect a small minority of the world’s population. In fact, to date, only about 350 people have been diagnosed with Progeria.

For Tiffany Wedekind, however, it wasn’t until she was in her 20s that she was diagnosed. Often, children diagnosed with progeria in their early years don’t live long. The life expectancy rate for children with progeria is 12 years old.

How Has Progeria Affected Wedekind?

Wedekind’s mom, Linda, carries the gene that gave her the condition. Her brother, Chad, passed away from the same disease at 39.

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Wedekind’s family fears she’ll suffer the same fate as her brother. She suffers from hair loss, tooth decay, and heart problems.

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However, her positive outlook motivates her family to stay strong. Her mom, Linda, is proud of how Wedekind has steered her life.

Wedekind weighs only 26 kilograms and is 4’5″ tall. Despite her health complications, she tries to live life to the fullest.

Wedekind is a businesswoman with a candle-making and jewelry store and 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.”

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Tiffany Wedekind | Source: YouTube.com/Truly

Tiffany Wedekind | Source: YouTube.com/Truly

Yoga helps her maintain a healthy immune system and keeps her flexible. She also loves to dance, hang out with friends, and travel the world.

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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.

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Tiffany Wedekind lost her teeth to Progeria | Source: YouTube.com/Truly

Tiffany Wedekind lost her teeth to Progeria | Source: YouTube.com/Truly

Nothing was more important than staying true to themselves. However, when Chad started suffering from cardiovascular problems and eventually broke his femur, doctors began looking into their case.

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Meanwhile, Wedekind had no other symptoms at the time than falling teeth. Tooth decay was a common symptom of progeria, along with stiff joints, growth failure, loss of hair, aged skin, and hip dislocation.

Despite being in her late 40s, Wedekind has the body of someone twice her age.

Tiffany Wedekind wearing a short wig. | Source: YouTube.com/Truly

Tiffany Wedekind wearing a short wig. | Source: YouTube.com/Truly

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As she grew older, her symptoms began adding up. She no longer has natural teeth, has lost her hair completely, and has mild aortic stenosis in her heart valve.

Her narrowing valve is a cause for concern, as it increases her likelihood of having a heart attack. It’s the same condition that ultimately killed Chad.

People see her diagnosis as a weakness, but all Wedekind sees is strength. “This resilience is a strength of mine,” she once said.

Tiffany Wedekind wearing a long wig. | Source: YouTube.com/Truly

Tiffany Wedekind wearing a long wig. | Source: YouTube.com/Truly

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Making The Most Out of Her Situation

Despite being in her late 40s, Wedekind has the body of someone twice her age. She’s beaten all odds regarding how long someone with progeria has to live 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.

People shower Tiffany Wedekind with praises for her resilience. | Source: YouTube.com/Truly

People shower Tiffany Wedekind with praises for her resilience. | Source: YouTube.com/Truly

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People shower Tiffany Wedekind with praises for her resilience. | Source: YouTube.com/Truly

People shower Tiffany Wedekind with praises for her resilience. | Source: YouTube.com/Truly

People shower Tiffany Wedekind with praises for her resilience. | Source: YouTube.com/Truly

People shower Tiffany Wedekind with praises for her resilience. | Source: YouTube.com/Truly

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Aside from staying busy with her businesses, dancing, and practicing 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 inspires 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.

People share their comments regarding Tiffany Wedekind. | Source: YouTube.com/Truly

People share their comments regarding Tiffany Wedekind. | Source: YouTube.com/Truly

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“Her positivity is contagious! That’s what keeps her so healthy and active, despite her condition and challenges. Such a beautiful soul,” someone shared.

People had only kind words to say about Wedekind and her story. Internet users were inspired and in awe of how she’s carried herself through the years.

Wedekind’s inspiring story is a stark reminder of the importance of living life to the fullest. She wants everyone to live in the moment and appreciate what life has to offer, as each day is a treasure.

Awareness and research regarding extremely rare diseases are more common nowadays, thanks to people like Tiffany Wedekind. In another heartbreaking yet touching story, parents who lost their son to a rare disease made it their mission to shed light on the importance of testing kids for genetic diseases.

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