R is for Rare

By Annie Watson

Annie Watson is a young adult who has lived with narcolepsy, a rare sleep disorder, for almost her entire life. Curious about other rare diseases, Annie will interview someone who has been affected (e... more

· Health & Fitness

4.7

66 ratings

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FAQs about R is for Rare:

How many episodes does R is for Rare have?

The podcast currently has 37 episodes available.

R is for Rare episodes:

July 15, 2021 23 - Menkes Syndrome ft. Daniel DeFabio
This week's interview is with Daniel DeFabio, whose son had Menkes Syndrome (aka Kinky Hair Syndrome). Menkes is a genetic disorder that affects the body's metabolism of copper, which can impact basic functions and life span as well. Daniel works at Global Genes in community engagement, and helped create The Disorder Channel and Disorder: The Rare Disease Film Festival. He and I discussed regrets with parenting, how his son's life was different because of Menkes, the impact of The Rare Disease Film Festival, and much more!
Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! And follow me on Instagram @risforrarepodcast!
The Disorder Channel is free on Roku and Fire TV devices. www.thedisorderchannel.com
For more on Global Genes programs and events: www.globalgenes.org
Rare Disease Film Festival Website - https://www.rarediseasefilmfestival.com/
Follow Daniel DeFabio on Facebook - https://www.facebook.com/rarediseasefilmfestival
Follow Daniel DeFabio on Instagram - https://www.instagram.com/disorderrarediseasefilms/
Disorder: The Rare Disease Film Festival on Linkedin - https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/
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42min
July 08, 2021 22 - Cystic Fibrosis ft. Alexa Wallin (@chronic.insights on Instagram)
This week's interview is with another INTERNATIONAL guest, Alexa Wallin! She is from Winnipeg, Canada, and has Cystic Fibrosis (CF), a rare and genetic condition that affects the respiratory and digestive systems. Alexa has received a lung transplant (and suffered a stroke during the transplant), and she also runs an Instagram where she shares educational content AND her story! Alexa and I discuss family planning w/ a genetic disease, how rare disease life is different as a Canadian, and much more!
Be sure to subscribe to R is for Rare on Spotify or wherever you get your podcasts, and be sure to follow me on Instagram @risforarepodcast!
Follow Alexa on Instagram - @chronic.insights
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1h 23min
July 01, 2021 21 — 18 Years Undiagnosed ft. Narcolepsy Patient Lindsey Kizer
This week’s interview is with another narcolepsy patient, Lindsey Kizer! Her story is unique because of how long it took to find a correct diagnosis as well as the fact that she was diagnosed well into her adult life. Because of her diagnostic experience, Lindsey advocates and spreads awareness so that nobody else has to live through years of uncertainty.

Lindsey and I talk about the quirks of narcolepsy, how other conditions affect her sleepiness, the importance of routine, and much more!!
Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! And follow me on Instagram @risforrarepodcast !
Lindsey Kizer on Instagram
Lindsey Kizer on Twitter
Lindsey Kizer on Facebook
Lindsey's Profile on WEGO Health
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1h 9min
June 24, 2021 20 - A Different CLOVES Story ft. Lindsey Johnson Edwards
This week's interview is with yet another CLOVES Syndrome patient, Lindsey Johnson Edwards! CLOVES was actually her second diagnosis (which we get into), but CLOVES has not stopped her from achieving her goals! She is currently a student at Dallas Theological Seminary, and is interested in the theology of suffering and flourishing. She and I talk about how faith and medicine intertwine, the various terms disabled people can use for their identity, Medicaid, and much much more!
Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts, and leave a review letting me know your thoughts!
Follow me on Instagram - @risforrarepodcast
Follow Lindsey on Instagram - @edwards_linds
Disability Language Style Guide from the National Center on Disability and Journalism
Visit Lindsey's Personal Website
Lindsey's AllStripes Ambassador Story
...more
1h 32min
June 22, 2021 BONUS - Addressing Jeopardy! & What POTS Actually Is
This bonus episode is addressing a recent clue on the game show Jeopardy! that was offensive and derogatory towards POTS Syndrome patients, as well as giving you some general info on what POTS actually is! I am not someone with POTS, but I will never stand back and let ableism in the media continue, especially in this way on a nationally televised game show. Hopefully this sets the record straight AND is educational!

Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! New episodes every Thursday!!

Follow me on Instagram - @risforrarepodcast
Article discussed - "'Jeopardy!' viewers upset over 'misogynistic', 'outdated' clue about a medical condition"
Johns Hopkins Medicine on POTS
Cleveland Clinic's article about POTS
American Heart Association Journal on POTS
Dysautonomia International: POTS
National Institute on Neurological Disorders and Stroke Information on POTS
American College of Cardiology: POTS Diagnosis and Treatment
...more
29min
June 17, 2021 19. Pulmonary Hypertension + Congestive Heart Failure ft. Gerry Langan
This week's interview is with a social media patient advocate, Gerry Langan! She has pulmonary hypertension, which is a blood pressure condition affecting the arteries in the lungs and heart, and has congestive heart failure. She is very transparent on her rare disease journey, her faith life, her journey as a mom, and everything in between. She and I talk about issues with finding healthcare specialists, how our Christian faith plays into our lives, and much more!
Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! And follow me on Instagram @risforrarepodcast!
Follow Gerry Langan on Instagram - @_gllangan or www.instagram.com/_gllangan
Visit Gerry's Personal Website - www.gerrylangan.com
...more
1h 25min
June 11, 2021 18. EDS + Lyme disease ft. Emily Hall
This week’s interview is with an amazing woman named Emily Hall, who has hEDS (hypermobile Ehlers-Danlos Syndrome) and Lyme disease. She also struggles with diagnosed and undiagnosed conditions that affect her husband and her daughter. She helped create the Our Odyssey website as you see it today. She also works on the Center for Lyme Action Committee and is pushing for the passing of the Lymphedema Treatment Act. Emily and I discuss ableism, the double standards of having a personal assistant, what advocating a young age looked like for her, and much more!
Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! REMINDER: New episodes will be coming out on THURSDAYS from here on out!
Follow me on Instagram - @risforrarepodcast
Follow Emily Hall on Instagram - @emilyandthezebracrew
Fulgent E-commerce Solutions - https://www.fulgentecom.com
Our Odyssey - https://ourodyssey.org
Center for Lyme Action - https://centerforlymeaction.org
Lymphedema Treatment Act - https://lymphedematreatmentact.org
...more
1h 37min
June 01, 2021 17. Life Update!
Hello everyone, so this week's episode is just a general update on what's going on in my life! I have to schedule guests for the rest of this month, so I wanted to give you all a quick update on my life right now and the things I want to work on for this platform! Hope you enjoy!
Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! And be sure to follow me on Instagram @risforrarepodcast (especially since I'll be doing a lot more on there this summer)!
For vaccine info: https://www.cdc.gov/coronavirus/2019-ncov/index.html
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36min
May 27, 2021 16. Ehlers-Danlos Syndrome ft. Aella Askew
Today's interview is with an amazing woman named Aella Askew! She is a retired circus performer (I'm not even kidding, she was in the circus), and was recently diagnosed with hEDS, or hypermobile Ehlers-Danlos Syndrome. According to The Ehlers-Danlos Society, EDS are "a group of hereditary disorders of connective tissues." There are 14 types of EDS, 13 of which are linked to genetic markers. Aella and I talk about her circus days, the dumb things doctors say via medical gaslighting, and much more! I know this is another longer episode, but Aella's story is a great portrait for what the everyday, American rare disease patient goes through, especially since rare disease treatments are so expensive when they shouldn't be.
Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! And be sure to follow me on Instagram @risforrarepodcast!
Follow Aella Askew on Instagram - @being.askew
The Ehlers-Danlos Society - https://www.ehlers-danlos.com
...more
1h 46min
May 19, 2021 15. Friedreich's Ataxia ft. Sam and Katlyn Ferguson
This week's interview is with the first married couple on R is for Rare, Sam and Katlyn Ferguson! Sam and Katlyn are high school sweethearts from outside of Houston, TX, and Sam was diagnosed with Friedreich's Ataxia, or FA, when he was 3. FA is a rare, neurodegenerative movement disorder, and has a whole host of symptoms. It is a progressive rare disease as well; for example, in recent years, Sam's eyesight has worsened. Sam, Katlyn and I discuss wheelchair accessibility, issues with Medicaid and Social Security Disability, marriage with rare diseases, and much more!
Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! And follow me on Instagram @risforrarepodcast!
Sam and Katlyn's Youtube Channel - https://www.youtube.com/channel/UC2FcicIVRu-dUOn7H3UhsEw
Follow Sam and Katlyn on Instagram - @life_with_sam_and_katlyn
...more
2h 6min

FAQs about R is for Rare:

How many episodes does R is for Rare have?

The podcast currently has 37 episodes available.

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