A 46-year-old woman has shared her story about living with a rare condition that causes her to age eight times faster than the average person, expressing gratitude for being “lucky to still be here.”
Tiffany Wedekind, residing in Columbus, Ohio, was diagnosed with a condition often referred to as the ‘Benjamin Button’ disease, in her late twenties. This condition is usually identified in childhood, and many affected individuals do not live beyond the age of 13.
While growing up, Tiffany appeared smaller than her peers and had a higher-pitched voice, but she didn’t notice significant differences until she began losing her hair and teeth in her early twenties.
Medical consultation and a DNA test revealed that she has progeria, also known as Hutchinson-Gilford progeria syndrome (HGPS), or the ‘Benjamin Button’ disease.
Unlike the fictional tale of Benjamin Button, where the character ages in reverse, Tiffany’s condition accelerates her aging process to eight times the normal rate.
According to WebMD: “It’s a rare genetic condition that results in a child’s body aging rapidly. A mutation in the LMNA gene causes progeria. Most kids with progeria don’t live past age 13.
“The disease affects people of all sexes and races equally. About one in every four million babies are born with it worldwide.
“A single mistake in a certain gene causes it to make an abnormal protein. When cells use this protein, called progerin, they break down more easily. This leads kids with progeria to age quickly.”
There is currently no cure for progeria; however, ‘treatments can help ease or delay some of the disease’s symptoms’.
While the majority are diagnosed in childhood with many not surviving past 13, Tiffany was diagnosed in her twenties and is thought to be the oldest known survivor of the condition.
She shared with Metro: “I age much quicker than everyone else and to be honest, I’m not sure why I’ve lived so long and outlived other people with progeria. I think it might be because I take good care of myself.”
To remain as healthy as possible, Tiffany maintains an active lifestyle, engaging in yoga, cycling, and following a healthy diet.
“I am blessed to be here and I’m doing everything I can to give myself the best chance. I saw how my brother struggled (with progeria) and how quickly things changed with him, so I live with a positive mindset.”
Tragically, her brother Chad, who was also diagnosed with progeria around the same time, passed away in 2012 due to complications from the disease.
Tiffany is now trying a new medication, Lornafarnib, which is expected to slow the aging process and is close to being approved as the first treatment for progeria.
She concluded: “I do my best to stay healthy because I am very lucky to still be here. My mindset is that I could be gone at any moment and I’m just trying my best to enjoy the life I have.
“[…] I am living life to the full while I can because I have seen how short life can be. I am amazed I am still here so I am treating my life like my playground.”