A 46-year-old lady has spoken up about being ‘fortunate to still be here’ despite living with a disorder that causes her to age eight times quicker than usual.
In her late twenties, Tiffany Wedekind of Columbus, Ohio, received a diagnosis of a disorder known as ‘Benjamin Button’ illness. Most people identify the illness in their youth, and many do not survive past the age of 13.
Tiffany didn’t notice anything significantly unusual growing up, despite being smaller than her friends and speaking with a higher-pitched voice, until she began losing her hair and teeth in her early twenties. The doctor took a DNA sample from Tiffany and confirmed her progeria, also known as Hutchinson-Gilford progeria syndrome (HGPS) or ‘Benjamin Button’ illness. Tiffany’s age accelerates to eight times that of a typical individual, unlike the 2008 film where Benjamin Button’s age reverses.
What is the Hutchinson-Gilford progeria syndrome?
According to WebMD, progeria is an uncommon hereditary disorder that causes a child’s body to age rapidly. A mutation of the LMNA gene causes progeria. Most children with progeria do not live past the age of thirteen. “The sickness affects persons of all sexes and races equally. It affects around one in every four million newborns across the world. A single error in a gene enables it to produce an aberrant protein. When cells employ this protein, known as progerin, they break down more quickly.” This causes children with progeria to age quickly.” There is presently no cure for progeria; however, ‘treatments can help relieve or postpone some of the disease’s symptoms.’ Tiffany received her diagnosis in her twenties, making her the oldest known survivor of the disease, even though most receive their diagnosis in infancy and many ‘don’t live past the age of 13’.
How Hutchinson-Gilford Progeria Syndrome Affects Tiffany
She told Metro that she ages considerably faster than everyone else, and she isn’t sure why she has lived so long and outlived other people with progeria. I guess it’s because I take excellent care of myself.”
Tiffany is ‘very active,’ doing yoga, going on bike rides, and eating ‘healthily’ to maintain her health. “I am grateful to be here, and I am doing everything I can to give myself the greatest opportunity. I saw my brother’s struggle (with progeria) and how rapidly things improved for him, so I live with an optimistic attitude.” Tiffany received a progeria diagnosis at the same time as her brother Chad, but the disorder’s complications led to his death in 2012. Tiffany is currently receiving a new medicine called Lornafarnib, which is expected to be authorized as the first-ever therapy for pneumonia.
“I try my best to be healthy because I am truly fortunate to still be alive,” she resolved. My thinking is that I might go at any time, so I’m simply trying to appreciate the life I have. […] I’m embracing life to the utmost, aware of its fleeting nature. I can’t believe I’m still here, so I’m treating my life like a playground.