A woman ages eight times faster than normal due to a rare ‘Benjamin Button’ condition.
Tiffany Wedekind, 41, has been told she is one in 50million due to her diagnosis of progeria, identified in 156 people worldwide, in her twenties.
She 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.
She is thought to be the oldest living person with the debilitating condition, with the longest known survivor, Leon Botha, being 26 before his death.
However, this is not clarified as medically, her mother, Linda, who is in her seventies, carries the gene responsible for the condition. But she does not suffer symptoms.
Ms Wedekind’s brother, Chad, passed away from the disease seven years ago, aged 39, and so the family fear they will lose Ms Wedekind.
She suffers with tooth decay, hair loss and heart problems due to the disease, and is just over 4ft 5in tall and weighs 58 pounds (26kg).
But the yoga-enthusiast lives life as normal as possible, running a cleaning company and candle-making business.
Tiffany Wedekind, 41, from Columbus, Ohio, has been told she is one in 50million due to her diagnosis of progeria, identified in 156 people worldwide
Ms Wedekind’s brother, Chad (see left), passed away from the disease seven years ago, aged 39, and so the family fear they will lose Ms Wedekind
She is the oldest known living person with the debilitating condition, although this is not confirmed, with the longest known survivor, Leon Botha, being 26 before his death
Ms Wedekind, from Columbus, Ohio, said: ‘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.
‘When my brother died, it really opened my eyes to what the rest of my life could be like.’
Dr Kim McBride, a clinical geneticist working at Nationwide Children’s Hospital in Columbus, has referred to Ms Wedekind’s case as incredibly rare.
Dr McBride first met Ms Wedekind and Chad over 10 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: ‘I knew that I was different but I didn’t care, I just wanted to be myself.’
It wasn’t until Chad started to have cardiovascular troubles and broke his femur bones that medical professionals started to take notice.
Ms Wedekind and her brother noticed their height difference to peers growing up but neither paid much attention until later on when Chad started to show problems
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 said when Chad started to have real complications, such as cardiovascular troubles and broken femur bones, medics investigated
Ms Wedekind said: ‘Nothing came of it until my brother started to have real complications, and then they decided to figure out what it was.
‘I wasn’t having any complications apart from my teeth falling out.’
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 said: ‘I don’t have many natural teeth now. That started at a really early age – they didn’t come out so they had to pull them out.
‘Now I’m losing my hair and have mild aortic stenosis in my heart valve.’
‘The fact I am so little means people think they can take advantage of me, but I bounce back from that.
‘This resilience is definitely a strength of mine.’
Ms Wedekind suffers with tooth decay, hair loss and heart problems due to the disease, and is just over four feet five inches tall and weighs 58 pounds
Ms Wedekind’s mother, Linda, who is in her seventies, carries the gene responsible for the condition but does not have symptoms of the disease, therefore she is medically the oldest known person with the disease
Ms Wedekind doesn’t allow her condition to hold her back, saying she doesn’t like it when people think she is disadvantaged because she is small
Ms Wedekind practices yoga to ‘maintain a strong immune system and keep flexible’
Ms Wedekind said her brother’s death opened her eyes to ‘what the rest of my life could be like’
WHAT IS PROGERIA?
Progeria, also known as Hutchinson-Gilford syndrome, is an extremely rare, progressive genetic disorder that causes children to age rapidly, beginning in their first two years of life.
The name derives from the Greek word meaning ‘prematurely old’.
Children with progeria generally appear normal at birth. During the first year, signs and symptoms, such as slow growth and hair loss, begin to appear.
Heart problems or strokes are the eventual cause of death in most children with progeria.
The average life expectancy for a child with progeria is about 12 years, but some with the disease die younger and some live 20 years or longer.
There’s no cure for progeria, but ongoing research shows some promise for a treatment.
Source: Mayo Clinic
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’.
She said: ‘I am very lucky, this is why I take good care of myself and I am proactive and not reactive.
‘I love to dance, dance any chance I get and I love hanging out with friends and love to travel.’
For Ms Wedekind’s parents, they couldn’t be more proud. Her mother, Linda, credits her positive attitude towards living.
Linda said: ‘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 are worried that she faces a similar fate.
‘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.’
Ms Wedekind runs a cleaning company and candle-making business
Dr Kim McBride, a clinical geneticist working at Nationwide Children’s Hospital in Columbus, has referred to Ms Wedekind’s case as incredibly rare
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
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, who is in her seventies, is the carrier of the disease but does not show symptoms, which medically makes her one of the oldest known living people with progeria.
Linda said: ‘I knew I could be the carrier. It was a horrible diagnosis but we have been working with the Progeria Foundation to prevent another child from having it.’
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: ‘Have your family and friends to keep you laughing and try and have an open heart and an open mind.
‘Try to find anything good in the day to counteract whatever it is that is going wrong, that’s what I’d say.’