By Martha Hewett @martha_hewett
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Videographer / director: Adam Gray
Producer: Martha Hewett / Ruby Coote
Editor: Marcus Cooper
Tiffany Wedekind, 41, was diagnosed with progeria, a disease that makes people age prematurely, when she was in her late twenties.
Her brother, Chad, who was also diagnosed with the illness, passed away from complications related to the disease seven years ago.
This case is particularly unique as children are usually diagnosed with progeria in their first two years of life, and tend to not live past adolescence.
Tiffany, from Columbus, Ohio, told Barcroft TV: “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.”
Dr Kim McBride, a clinical geneticist working at Nationwide Children’s Hospital in Columbus, has referred to Tiffany’s case as incredibly rare.
Dr McBride first met Tiffany and Chad over 10 years ago, and put them in contact with researchers to investigate their genes further.
“For people with the typical form of progeria, they live a very short life with many dying in their teens, so to have Tiffany at her age is remarkable.” Dr McBride explained.
Tiffany, who runs her own cleaning company and candle-making business, is just over four feet five inches tall and weighs 58 pounds.
“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,” she added.
Despite Tiffany and Chad noticing their height difference to peers growing up, neither paid much attention until later on.
“I knew that I was different but I didn’t care, I just wanted to be myself,” Tiffany said.
It wasn’t until Chad started to have cardiovascular troubles and broke his femur bones that medical professionals started to take notice.
“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,” Tiffany explained.
Tooth decay is common amongst those diagnosed with progeria, and is something Tiffany now suffers from.
“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.”
Despite this, Tiffany feels incredibly fortunate in comparison to others who suffer from the disease.
“I am very lucky, this is why I take good care of myself and I am proactive and not reactive.”
To stay healthy, Tiffany practices yoga to maintain a strong immune system and keep flexible.
She also loves to socialise and keep busy.
“I love to dance, dance any chance I get and I love hanging out with friends and love to travel.”
She added: “When my brother died, it really opened my eyes to what the rest of my life could be life.”
For Tiffany’s parents, they couldn’t be more proud. Her mother, Linda, credits her positive attitude towards living.
“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,” Linda said.
Naturally, after losing their son Chad, Tiffany’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.”
Tiffany’s mother, who is in her seventies, is the carrier of the disease, which essentially makes her one of the oldest-living people with progeria.
Linda explained: “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 Tiffany 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.”
But for Judy, Tiffany’s high school friend, she is an inspiration.
“I admire her ability to get back up again, she has faced adversity but has never let any of that get her down.
“She sees adversity as an incentive to go out and do better – that’s who she really is.”
For Tiffany, her key advice is for those suffering with the disease is to keep your spirits high.
“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.”