Audacious with Chion Wolf

When you don't look your age: Life with progeria and cutis laxa


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The moment we meet someone – especially for the first time – we're sizing them up. We notice perceived gender, race, and one of the big ones: age.

But what happens when you look much older than you actually are?

Cécile Gueye is one of only 500 people in the world known to have Cutis Laxa. That's a condition where her skin lacks elasticity. Although she's in her early 30s, she looks like she's in her 50s or 60s. She talks about how this has challenged her personal growth, and how she sometimes uses it to her advantage.

And Michiel Vadeweert has Progeria, which is also known as Hutchinson-Gilford Progeria Syndrome. It's a rare, fatal genetic condition of “rapid-aging” in children. According to the progeria research foundation, only 210 people in the world have been identified with the condition.

Resources:

  • The Progeria Research Foundation
  • Cutis Laxa International

Suggested episodes:

  • (Almost) Everybody Hurts: An Exploration of Pain
  • Total Recall: What It's Like To Remember Every Day Like It Was Yesterday
  • Body Integrity Dysphoria: When being disabled is a desire

GUESTS: 

  • Michiel Vandeweert: A 26-year-old man from Belgium. He has progeria, a rare condition that causes accelerated aging
  • Cécile Gueye: A 32-year-old woman who lives near Geneva, Switzerland. She has cutis laxa, a rare connective tissue disorder

Support the show: https://www.wnpr.org/donate

See omnystudio.com/listener for privacy information.

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Audacious with Chion WolfBy Connecticut Public Radio

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