45-Year-Old Shares Her Story to Raise Progeria Awareness

At 45 years old, Tiffany Wedekind has embodied a sense of gratitude. Each day, she wakes up happy to be alive – and aims to bring that happiness to others. At her studio, Wanderlust Studio in Columbus, OH, Tiffany works towards her goal through sharing the work of other artists, selling candles, accessories, and more, offering wellness and yoga classes, and – of course – raising progeria awareness.

You see, Tiffany, like her mother and her younger brother Chad, has progeria, a rare genetic condition characterized by the appearance of premature aging. Unfortunately, Chad passed away eleven years ago at 39 years old. But Tiffany and her family have donated some of their DNA to help advance scientific discovery and therapeutic development. 

According to ABC6, Tiffany’s goal is not only to uplift others, but to offer education and outreach about progeria. Typically, this condition comes with a life expectancy of seven to thirteen years; Tiffany, who says that her body is that of an 83-year-old, has far outlasted that.

She credits this, in part, to her focus on wellness, yoga, and kindness. Rather than let life get to her, she works to help those who are struggling. Tiffany wants people to know that they are not alone. Now that’s a goal we can get behind! 

About Progeria

Progeria is also known as Hutchinson-Gilford progeria syndrome. As described above, this rare genetic condition causes features that resemble premature aging. LMNA gene mutations cause progeria. Normally, LMNA helps to produce lamin A, a protein that supports the membrane around the cell’s nucleus. However, the genetic mutations cause unstable nuclei, causing the process of premature aging. Typically, those born with this condition begin to show signs of accelerated aging within the first two years of life. Symptoms and characteristics can include:

  • Loss of hair and body fat
  • Prominent eyes, a thin nose, thin lips, a small chin, and protruding ears
  • Aged-looking spin
  • Visible veins
  • Slowed growth
  • Hearing loss
  • A localized scleroderma-like skin condition
  • Joint stiffness
  • Dislocated hips 
  • Hardened arteries and related heart issues 
  • Stroke

Currently, there is no cure for progeria. Lonafarnib was FDA-approved as a treatment option in 2020.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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