A woman who is living with a one in a million rare disease which makes her age eight times faster like Benjamin Button has opened up about her condition.
Tiffany Wedekind is a 47-year-old woman who was given the nickname ‘Benjamin Button’ after the 2008 flick, as since her teenage years, she has been living with a condition which makes her look a lot older than she is.
Despite having the condition, she was only diagnosed at 31 and was told that it is called Hutchinson-Gilford progeria syndrome.
Advert
The syndrome kills most people as teenagers, as it ‘causes rapid aging in children’, as per the Cleveland Clinic, which states that it is caused by ‘a tiny genetic mutation’ which ‘causes signs of aging such as balding and wrinkled skin’.
Sadly, the Clinic confirms that ‘the condition is always fatal’ and death most often ‘occurs as a result of heart attack or stroke’, but it can be slowed down by a certain medication.
For Tiffany, she has lost all her natural hair and teeth and her heart is slowly deteriorating as she was diagnosed with aortic stenosis, which will need an aortic valve replaced.
Advert
Despite all of this, she said she has been living her life to the fullest.
So far in life, Tiffany has gotten married, divorced, became a business owner, and is a yoga enthusiast to keep her health optimal.
She 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].
Advert
“We’re all on the same boat. I’m not afraid to show myself bald and toothless. You don’t have to be afraid of it [death].”
She added: “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.”
Sadly, her brother Chad, 39, was also born with the condition, and the pair only went on to recognise that something was wrong as they hit puberty.
At that time, their facial features started changing and Tiffany’s teeth decayed, making it hard to eat, and her hair thinned in her 20s.
Advert
Because of the disease, Tiffany’s growth suffered too, and she now stands at just 4 foot 4 inches.
Chad, Tiffany and her mom went on to learn that they all had the mutation gene after Chad was forced to undergo heart surgery due to the condition, and he sadly passed away three years later in 2001 from sepsis and a heart attack.
Tiffany’s mom, Linda, 75, also passed away in September 2024.
Advert
She 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.”
After the loss of her brother, she decided to live for herself and ended her eight-year marriage, and started her own business.
She explained that this has led her to ‘forget’ that she has the condition as she’s ‘busy living my life’.
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.”
Britt Jones