A woman living with a one-in-a-million disease which makes her age 10 times faster than the average person says aging is a “privilege.”
Tiffany Wedekind, 47, was only diagnosed with Hutchinson-Gilford progeria syndrome at age 31.
She had already defied the odds as the syndrome kills most people in their teens.
Over time Tiffany has gradually lost all her natural hair and teeth and has aortic stenosis and will eventually need a aortic valve replaced.
But she says it hasn’t stopped her living life to the full – she got a divorce, started her own businesses and does daily yoga to stay in good health.
Tiffany, who has her own artist studio and candle company, from Columbus, Ohio, US, said: “My mortality is in my face everyday.
“But I forget half the time.
“I’ve lived several lifetimes in a life that wasn’t expected for me.
“I know life can end just like that.
“You don’t have to be afraid of it [death].
“We’re all on the same boat.
“I’m not afraid to show myself bald and toothless.
“People need to see I am who I am to the core. It doesn’t matter that I don’t have hair.
“I am who I am despite the fact I am withering away.”
Tiffany and her brother, Chad, 39, were both born with the condition but only started to become aware something was wrong when they each hit puberty.
She was a “hyper kid” who tried out all the sports and activities as a child.
They started to notice their facial features were changing – Tiffany’s teeth were decaying and her hair was thinning out by her 20s.
The disease is also characterized by their small stature – with Tiffany standing at just 4-foot-4-inches tall.
Tiffany said: “Growing up my teeth – I always had issues with my teeth.
“I went through a lot of trauma.
“It was physically hard to eat at times.”
Chad, Tiffany and her mom found out they all had the mutation gene in 2008 which causes progeria after Chad underwent open heart surgery.
He sadly passed away in 2011 from sepsis and a heart attack and Tiffany recently lost her mom Linda, 75, in September 2024.
Tiffany said: “When we found out what we got I thought ‘well that’s crazy’.
“They said ‘you’ve made it this far – you’ve outlived the life expectancy’.
“How my brother died was so traumatic.
“I put myself out there. Life goes by so quick.
“That didn’t kick in until my brother died.”
Tiffany decided to put herself first and ended her eight-year marriage, quit her job and started her own business.
She now spends her days focusing on herself – doing daily yoga and eating well.
Tiffany said: “I forget half the time I have progeria.
“I’m busy living my life.
“People don’t realize our bodies are machines that we have to take care of.
“I see people wrecking havoc on their own existence.”
Tiffany is passionate about healthy living and doesn’t smoke – and only has the occasional cocktail.
She hopes to keep growing her businesses and travel in the near future.
However she will eventually need an aortic valve replaced which she is terrified for.
Tiffany said: “I’m living my life in a good positive space.
“I’m a dreamer.
“I want to stop people focusing on the fact we are ageing and look at that as a privilege.
“People will complain about getting old, having wrinkles. It’s not going to matter.
“I want to focus on living my life.
“I’m so unique.
“I’m like a fish constantly trying to come out the dark.
“I’m 4ft, barely 56lbs but I’m a powerhouse.”
