A woman suffering from a rare ‘Benjamin Button’ condition has defied doctors’ predictions of an early grave.
Tiffany Wedekind from Columbus, Ohio, suffers from Hutchinson-Gilford progeria syndrome, which causes patients to age 10 times faster than the average person.
As a result, it kills most sufferers in their teens and there are only 150 people in the world currently with the condition.
Yet Ms Wedekind, known as ‘tenacious Tiffany’ for her remarkable resilience, marked her 47th birthday last month, making her by far the oldest person with progeria.
She told DailyMail.com: ‘My outlook on life since I was a younger has always been that of gratitude and positivity.
‘I know that I am very fortunate to still be alive, that is not lost on me. Everyday I do my best to experience what each new day brings.
‘I know that it will eventually and without knowing when, it will all be over. So things I thought really mattered, don’t. Things that make me feel alive, do.’
She is now embracing her 40s and fulfilling many of her big bucket list items, which recently included meeting her idol pro basketball player, Shaq.
Tiffany Wedekind from Cleveland, Ohio, was diagnosed a rare genetic disorder called Hutchinson-Gilford progeria in her twenties, which causes rapid aging. Above, with Shaq
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A photo posted to her Instagram, where she refers to herself as ‘Tenacious Tiffany,’ shows her 4ft 4in frame dwarfed by the 7ft 1in sportsman.
Progeria earns its nickname from the 2008 movie The Curious Case of Benjamin Button, which is about a fictional character who ages backward, eve though people with progeria age chronologically.
The average age of death for progeria patients is 14.5 years without treatment, although some adults with progeria have been known to live into their early 20s.
The other oldest known person with progeria was Italian resident Sammy Basso, but he passed away in October 2024 at the age of 28.
It is caused by a mutation in a gene called the LMNA gene, which is inherited from a person’s parents.
Ms Wedekind’s late mother Linda carried the gene but did not suffer from any symptoms.
However, Ms Wedekind’s older brother, Chad, also had the disorder.
Chad also lived longer than expected but in 2011 died at 39 from a heart attack.
Most people with progeria die of complications related to atherosclerosis, which causes a hardening of the arteries due to a build up of plaque.
This can result in a heart attack, congestive heart failure or a stroke.
Along with heart problems, which Ms Wedekind manages with medication, she has also lost all of her natural hair and teeth. These are common symptoms of the syndrome.
But the yoga-enthusiast lives life as normal as possible, running a cleaning company and candle-making business and posting regular inspiring content to social media.
Ms Wedekind is ‘remarkable’ because children are usually diagnosed with progeria in their first two years of life, and tend to not live past the age of 12
Ms Wedekind has gone one step further by embracing her 40s and fulfilling many of her bucket list items
Dr Kim McBride, a clinical geneticist working at Nationwide Children’s Hospital in Columbus, has referred to Ms Wedekind’s case as incredibly rare
She told DailyMail.com ‘I am living a life that could have ended a long time, not just because of Progeria, but life itself.
‘So I no longer give energy to people or experiences that drain me of this gift I still have. That gift is ME.’
Dr Kim McBride, a clinical geneticist working at Nationwide Children’s Hospital in Columbus, has described Ms Wedekind’s case as incredibly rare.
Dr McBride first met Ms Wedekind and Chad more than 15 years ago, and put them in contact with researchers to investigate their genes further.
He said: ‘For people with the typical form of progeria, they live a very short life with many dying in their teens, so to have Ms Wedekind at her age is remarkable.’
Children with progeria generally appear normal at birth but during their first year, signs and symptoms, such as slow growth and hair loss, begin to appear.
Despite Ms Wedekind and Chad noticing their height difference to peers growing up, neither paid much attention until later on.
Ms Wedekind said: ‘My condition developed overtime. When I was born there were no signs of my condition, only as I started to grow up did the changes start occurring at a pace much slower than most with progeria.
Recent Instagram images shows the progeria advocate enjoying travels across the US
Ms Wedekind’s parents, pictured when she was younger, said they ‘worry every day’ about Ms Wedekind after the death of their son to the same disease
‘Only my brother was experiencing challenges much earlier, and my mom was unaware of her having it. We all got diagnosed at the same time, in 2008. I was 31.
‘The biggest changes for me at 47, are that I now have Aortic stenosis, I have lost all of my natural hair and teeth.
‘My body mass has decreased significantly over time due to fat loss caused by progeria and I have also lost both my mom and my brother due to complications from our disease. That has been a huge change.’
Tooth decay is common among those diagnosed with progeria, as well as growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation and heart problems.
Ms Wedekind feels incredibly fortunate in comparison to others who suffer from the disease and practices yoga to ‘maintain a strong immune system and keep flexible’ and she also swears by cannabis.
Detailing what she thinks has contributed to her good health, she told this website: ‘I have always been active and tried to eat what my body and mind needs. Especially now.
‘I eat to fuel not to fill but fill my life with nutrition! I eat very little fast food and have a lifestyle that is more centered around my state of being.
‘I do yoga, drink lots of living water hydration, juicing my greens, and meals geared more towards heart health. I do love my ice cream, though.
‘I know my body is a machine and that if I do not maintain it to the best of my ability, it will break down faster.’
When it comes to her mind, Ms Wedekind says she finds it of upmost importance ‘not dwell on the past and move forward in a more positive direction.’
She adds: ‘I don’t allow others to dictate how I feel, or how I should live my life.
‘I love with all my heart and live with the best intentions for myself and others.’
For Ms Wedekind’s late parents, they expressed how proud they were of her. Her late mother, Linda, praised her positive attitude towards living.
Ms Wedekind and her brother, Chad, noticed their height difference to peers growing up but neither paid much attention until later on when Chad started to show problems
Ms Wedekind’s brother, Chad (left), passed away from the disease at 39
Although Ms Wedekind is aware that living to her age is incredibly unique with her disease, she lives her life as normally as possible
Linda said in a previous interview: ‘She has lived a full life and is independent, she does things for herself.
‘I am very proud of her. She is a go-getter and sets goals for herself.’
Naturally, after losing their son Chad, Ms Wedekind’s parents were always worried that she faced a similar fate.
Linda said before passing: ‘Of course, you worry every day. A day doesn’t go by that it doesn’t cross my mind, but she has got the right attitude and doesn’t let anything stop her.’
Progeria is caused by a mutation in the gene called LMNA, which produces the Lamin A protein, the structural scaffolding that holds the nucleus of a cell together.
The defective Lamin A protein makes the nucleus unstable, leading to premature ageing, researchers believe.
Ms Wedekind’s mother was the carrier of the disease but did not show symptoms, which medically made her one of the oldest known living people with progeria as she lived into her late 70s.
Although Ms Wedekind is aware that living to her age is incredibly unique with her disease, she lives her life as normally as possible.
‘I don’t know if I look at myself as a miracle, I know that I am special and I won’t deny that because I am who I am, but I am just like everyone else.’
For Ms Wedekind, her key advice is for those suffering with the disease is ‘stay solid and strong in who you are.’
She adds: ‘I forget a lot of the times that I am as small as I am, or that I even have a disease.
‘I am too busy living my life to the fullest, the way I know how and learning along the way. We only have one shot and if we are lucky, we get a new opportunity everyday to live our life better than we did the day before.
‘There is no one like you. Own that. We belong to ourselves, so own who you are. This life is what you make it and you were born to be alive. Try to take the negative and somehow turn it into a positive, and take the positive and run full force with it.
‘Tap into your creative mind and make your life worth living. I have always used struggles as fuel to my fire to survive and succeed.’
