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Playlist: Audacious Rare Conditions

Compiled By: Connecticut Public (WNPR)

 Credit:
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Sensitive sounds and sweaty skin: Unraveling hyperacusis and hyperhidrosis

From Connecticut Public (WNPR) | Part of the Audacious with Chion Wolf series | 50:00

On this episode of Audacious, meet a man with hyperacusis - extreme sensitivity to sound, and a woman with hyperhidrosis - unpredictable, controllable sweating.

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Imagine if everything you heard - a door clicking shut, a passing car, dishes being put away, even your own voice - was excruciatingly loud.

Hear how one man copes with hyperacusis, a condition that affects one in 50,000 people.

And a flute player talks about how she managed her hyperhidrosis - or extreme sweating - when she was playing Carnegie Hall and in everyday life.

Listen to the extended conversation with David Vance with closed captions. He joined us wearing ear protection.

GUESTS: 

Full house: The line between collecting, clutter, and hoarding disorder

From Connecticut Public (WNPR) | Part of the Audacious with Chion Wolf series | 50:00

In this episode of Audacious about de-cluttering and hoarding, a woman gives Chion a tour of her home. Plus, how YouTube helped another woman manage her relationship with hoarding.

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Hoarding disorder, as defined by the Mayo Clinic, is “a persistent difficulty discarding or parting with possessions because of a perceived need to save them.”

On this episode of Audacious, an expert on hoarding disorder explains the nuances of the condition. Then, a woman walks Chion through her home as she explores new ways to declutter her house. Plus, another woman talks about how she began making a lot of progress managing hoarding disorder by talking about it on YouTube.

For more information, visit NAMI - the National Alliance on Mental Illness. Their helpline is is 800-950-6264.

Also, explore the Institute For Challenging Disorganization and the National Association of Productivity & Organizing Professionals.

Special thanks to hoarding disorder remediation expert, Melissa Hladek, for help with this episode.

GUESTS: 

Aftershocks: Life after getting struck by lightning

From Connecticut Public (WNPR) | Part of the Audacious with Chion Wolf series | 50:00

On this episode of Audacious, hear how two people's lives were changed after getting hit by lightning. And an expert will talk about ways to avoid getting struck.

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When we talk about people getting struck by lightning, we don’t often think, “wait, what does that really do to a person?”

A lightning strike expert talks about the physical and psychological effects of lightning hitting the human body, and tells us exactly what to do when a storm is coming.

Then, meet one woman whose personality and body changed forever, and one man who, after his near-death experience getting hit, became obsessed with the piano.

GUESTS: 

  • Dr. Mary Ann CooperEmergency physician and international expert in lightning injuries and lightning injury prevention. She is the co-author of Reducing Lightning Injuries Worldwide
  • Shana Turner: Lightning strike survivor and special education teacher in Fayetteville, North Carolina
  • Tony Cicoria: After getting struck by lightning in 1994, became obsessed with piano music. An original composition had been forming in his head since his near-death experience with the lightning bolt, called “Opus I: Lightning Sonata”. He recorded it in 2008

Actors with facial differences discuss what it means to be seen

From Connecticut Public (WNPR) | Part of the Audacious with Chion Wolf series | 50:00

This episode of Audacious is the second installment about people who have facial differences. In this episode, meet two actors who worked together in the 2018 movie, 'Happy Face.'

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What's it like when, due to a condition you had early on in life, your face looks very different from everybody else's?

And what's it like to use that face as an actor?

In this second installment featuring conversations with people who have facial differences, we meet two performers who appeared together in the 2018 movie Happy Face.

For more information about facial differences, visit About Face.

GUESTS: 

  • Dawn Shaw: Author, motivational speaker, and actress based in Washington. Her face is half-paralyzed since the removal of a tumor at birth. Her three books include her memoir, Facing Up To It, and Facial Shift, a guide to navigating the world with a facial difference
  • David RocheInspirational humorist, keynote speaker, and performer based in British Columbia, Canada. He was born with a 'vascular malformation' on the left side of his face and neck. In addition to his memoir, The Church of 80% Sincerity, his new book, Standing at the Back Door of Happiness, will be released on April 20

Extreme allergies and rare conditions can teach us a lot about human tolerance

From Connecticut Public (WNPR) | Part of the Audacious with Chion Wolf series | 50:00

On this episode of Audacious: There are the common allergies like pollen, peanuts, and certain medications. But what if you had a bad reaction to water? To sunlight? And to exercise (seriously)?

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It’s a wild world, and there’s a lot to be allergic to.

Sure, there are the common ones like pollen, peanuts, and certain medications. But what if you had a bad reaction to water? To sunlight? And to exercise (seriously)?

Hear what it’s like to have these rare conditions, and how the people who have them empower themselves to manage them.

GUESTS:

  • Rachel Warwick of Derbyshire, England, has aquagenic urticaria, which means she is allergic to water

  • Ann Reardon of Sydney, Australia, is the author of How to Cook That: Crazy Sweet Creations, and host of the YouTube channel, How To Cook That. She has food-dependent exercise-induced anaphylaxis

  • Jasmin Barman-Aksozen of Zurich, Switzerland, has Erythropoietic Protoporphyria - an extreme toxic reaction to sunlight

  • Patricia Rydeen of Minneapolis, MN, is a fan of Brewers baseball, and has an allergy to bad umpires

What it’s like to be able to smell illnesses

From Connecticut Public (WNPR) | Part of the Audacious with Chion Wolf series | 50:00

On this episode of Audacious, meet a woman who is able to smell cancer, Alzheimer’s, diabetes, TB, and Parkinson’s.

Plus, hear from two women who have found different ways of getting through life with highly sensitive senses of smell.

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What’s it like to be able to smell cancer? Alzheimer’s? Diabetes? Parkinson’s?

When a nurse noticed a change in her husband’s scent, it sent her down an extraordinary path of discovery - that she could smell multiple diseases and conditions.

Meet Joy Milne, and hear from two women who have found different ways of getting through life with highly sensitive senses of smell.

GUESTS: 

  • Heather Ream is a writer from East Tennessee, who is also a Highly Sensitive Person (HSP)
  • Wendy Helfenbaum is a television producer, translator, journalist, and writer who has an exceptionally sensitive sense of smell
  • Joy Milne is a retired nurse from Perth, Scotland. She can smell Parkinson’s, tuberculosis, Alzheimer's, cancer, and diabetes.

Hearing every color, feeling every earthquake: Life as a cyborg

From Connecticut Public (WNPR) | Part of the Audacious with Chion Wolf series | 50:00

On this episode of Audacious, meet a man who was born colorblind but can now hear colors thanks to an antenna implanted into his skull. And a choreographer feels earthquakes via sensors in her feet.

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In the movies, cyborgs often don't have a soul or a conscience.

But in real life, some people become cyborgs in order to enhance the human experience and to be more connected with nature.

Like Neil Harbisson. He was born colorblind, but now, thanks to an antenna implanted into the base of his skull, he can hear colors!

And choreographer, Moon Ribas, had implants embedded in her feet that vibrated every time there was an earthquake of at least 1.0 on the Richter scale.

They are co-founders of the Transpecies Society and the Cyborg Foundation.

GUESTS: 

  • Neil Harbisson: For almost 20 years, has had an antenna implanted into the back of his skull that translates color into sound
  • Moon RibasA choreographer who, for seven years, had implants in her feet that vibrated every time there was an earthquake of 1.0 on the Richter scale

Facing the world with visible facial differences

From Connecticut Public (WNPR) | Part of the Audacious with Chion Wolf series | 50:00

Today, meet three people with visible facial differences: One whose face was burned by fire, another whose face was burned by a botched medical procedure, and another who lost her nose to a dog bite.

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I think it’s safe to say that all of us have multifaceted relationships with the way our faces look.

We may notice a blemish here, a scar there, a bump or a divot all arranged on our face to show the world some of what makes us… us.

But what if, on your precious face, it wasn’t just a blemish or a bump, but an injury so extensive that it makes people stare? Makes you reconsider what beauty means, and how you measure your worth. Makes public radio show producers reach out to ask you to talk about it: How it’s formed you, how it’s changed you, how it hasn’t… and if you’d reverse it if you could.

Today, meet three people who’ve had this experience: One whose face was burned by fire, another whose face was burned by a botched medical procedure, and another who lost her nose to a dog bite.

There was a special mention of the show brought up during Tessa's segment on the complicated relationship models have to beauty. Listen to it here.

GUESTS: 

  • Zaid Garcia: When he was two, a candle fell onto his blanket when he was in bed, and he suffered burns on 80% of his body. His entire scalp is scarred, skin covers his eyes, and he’s lost his nose, his lips, his hands, and one toe. He lives in Galveston, TX, and his GoFundMe has gone viral
  • Tessa SchiethartBorn with Sturge-Weber Syndrome, which resulted in glaucoma and a port wine stain on her face. When she was two years old, a medical procedure to remove the birthmark burned and scarred her from scalp to mouth. She is a coach living in Amsterdam, Netherlands, and is the author of "To Face The Work", about the experiences of people with visible facial differences in the workplace
  • Gabby MyersHer nose was bitten off by a dog in 2017. She has had seven reconstructive surgeries. She lives in Elwood, Indiana

The hidden hunger of Pica: Stories from people who eat objects

From Connecticut Public (WNPR) | Part of the Audacious with Chion Wolf series | 50:00

On this episode of Audacious, meet two people who have struggled with Pica, an disorder where people eat objects, including rocks, magnets, screws, and yarn.

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When Shannon Litchfield’s 11 year-old son, Cameron, was losing weight and feeling sick, she took him to the emergency room. The x-ray they saw showed magnets, screws, and yarn in his stomach.

We’ll explore the eating disorder known as Pica, where people are drawn to eating objects. A researcher talks about her findings after completing a research study with 600 parents of young children, and meet a woman who ate nearly two pounds of rocks every day for 20 years.

Click here for more information on Pica.

GUESTS:

  • Teresa Widener: A Bedford, Virginia woman who developed anemia during pregnancy, which began a 20 year addiction to eating rocks 
  • Sigita Lesinskiene: A child and adolescent psychiatry consultant at the Ministry of Health in Lithuania, and a professor of child and adolescent psychiatry at Vilnius University who has studied Pica in her country
  • Shannon and Cameron Litchfield: Albany, Oregon residents who are learning to navigate life with Pica, after Cameron had to have surgery to remove magnets, screws, and yarn from his stomach

Body Integrity Dysphoria: When being disabled is a desire

From Connecticut Public (WNPR) | Part of the Audacious with Chion Wolf series | 50:00

On this episode of Audacious: What if you've always felt as though one of your healthy limbs doesn't belong? Meet one man who found relief after having his leg amputated.

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What if, for as long as you can remember, you’ve strongly felt as though one of your healthy limbs just doesn't belong? You’ve always wished it could be amputated.

You aren’t the only person with this feeling, but you would be one of fewer than 400 documented cases of body integrity dysphoria (BID) or body integrity identity disorder (BIID) in the world.

Meet a man with BID, who, after years of struggling with his bodily identity, traveled to Asia to have his left leg under the knee amputated.

Hear how he’s felt since the surgery, and meet a bioethicist and moral philosopher who has pondered the origin and ethics of this rare condition.

GUESTS: 

  • Dr. Richard B. Gibson: A bioethicist and moral philosopher currently at the University of Texas Medical Branch. His thesis was about the ethics of elective amputations, specifically for body integrity identity disorder (BIID)
  • Dan: A Wyoming man with BIID who had his left leg amputated below the knee in 2009, and started the BIID support group, “Fighting It”

Beyond the mask: Conversations with psychopaths

From Connecticut Public (WNPR) | Part of the Audacious with Chion Wolf series | 50:00

Meet two people who are psychopaths on this episode of Audacious. Learn about common misunderstandings about their inability to bond or experience long-lasting emotions.

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When you think of the word, "Psychopath", what do you picture?

A serial killer? A dictator? A cut-throat CEO? Your ex?

Sure, a few of those folks may be psychopaths. But many people with this mental health condition would argue that the usual stereotypes are way off. They are incapable of feeling empathy or developing any attachments, but that doesn't mean they are compelled to cause harm.

Today, two people who are psychopaths talk about how they've learned to adapt to a world full of feelings.

Listen to the extended version of our conversation with Athena Walker.

GUESTS: 

Fighting for truth: The struggle to overcome pathological lying

From Connecticut Public (WNPR) | Part of the Audacious with Chion Wolf series | 50:00

On this episode of Audacious, why do pathological liars do what they do? Hear from two people who have spent years reconciling their relationship with telling the truth.

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Do pathological liars always believe the stories they tell?

What does it take for them to see the patterns behind their lies?

And what does honesty sound like from someone who has spent most of their lives making things up?

Two people talk about what it’s like to learn to tell the truth, and a researcher on deception shares how you can most effectively spot a lie.

Special thanks to Ellen Barry for her New York Times article, Can This Man Stop Lying?, which inspired this episode.

GUESTS: 

The misunderstood pain of persistent genital arousal disorder

From Connecticut Public (WNPR) | Part of the Audacious with Chion Wolf series | 50:00

On this episode of Audacious, meet three people who have persistent genital arousal disorder, including one woman who has around 100 orgasms a day.

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Many of us would think that feelings of arousal would always be welcome! And maybe we would even want more of it.

But for our guests on this episode, persistent genital arousal disorder has made life very difficult.

One woman copes with more than 100 orgasms a day, another searches for peace as her body is stimulated by emotions of all kinds, and another has undergone surgeries and treatments to find relief.

We also hear from one of the world experts on this rare condition on what we know about it, and what can be done to help.

GUESTS: