Episode 165 | Heidi Sedra is turning the corner in her battle with Sarcoidosis

Tate Basildon has been through it all.  And he is still going through it.  Pulmonary and cardiac sarcoidosis have invaded his life.  He takes prednisone and suffers.  Yet he says he wakes up every day lucky to be alive.  Tate is a fellow podcaster who shares his stories on his own platform.  In this episode of the FSR Sarc Fighter Podcast, he talks about the blows he's suffered at the hands of sarcoidosis, but how he still works as a chef and tries to keep his life on track. SHOW NOTES Tate's website and podcast: https://tatebasildon.com/ Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/ John's story from the White House on Col. John Ripley: https://www.wsls.com/video/news/2026/06/19/col-john-ripley-of-radford-receives-posthumous-medal-of-honor/   MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me  [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology            

Heidi Sedra is a healthcare professional, but that didn't make her path to diagnosis and treatment any easier.  In this episode of the FSR Sarc Fighter Podcast, Heidi shares how sarcoidosis put her in the hospital -- and that's just part of the story.     SHOW NOTES Episode 48 with Dr. Jinny Tavee  https://beatsarc.podbean.com/e/episode-48-dr-jinny-tavee-is-a-neurosarcoidosis-specialist-with-a-unique-approach-to-fighting-the-disease/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me  [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology        

A new study from Europe takes a look at a clue as to why pulmonary sarcoidosis is worse in some people than others.  And John has a close encounter with five bears.     Show notes The study from Sarcoidosis news: https://sarcoidosisnews.com/news/genetic-variant-linked-worsening-lung-disease-sarcoidosis/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me  [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology    

New studies show new hope and understanding for battling sarcoidosis.  In one, researchers in the Netherlands looked at the effectiveness of steroids in treating kidney sarcoidosis. In other news there's seems to be promise in fighting sarcoidosis of the skin. Show Notes   Mary McGowan's message on YouTube: https://www.youtube.com/watch?v=CGtM5MHSV88 Sarcoidosis News Report on steroids and kidney sarcoidosis: https://sarcoidosisnews.com/news/corticosteroids-rapidly-improve-kidney-function-renal-sarcoidosis/ The latest from the American Academy of Dermatology:  https://www.stopsarcoidosis.org/dermatology-meeting/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me  [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology    

It's clear that military veterans are more likely to suffer from Sarcoidosis than the general population.  Dan Frank served as a Navy pilot.  Years later, doctors told him he had sarcoidosis.  While we don't know the cause -- the medical world and indeed the U.S Government, through the PACT Act, recognize that Military service may expose service members to conditions that cause sarcoidosis.  In this episode of the FSR Sarc Fighter Podcast, Dan shares his story of life on an aircraft carrier and his battle with sarcoidosis.   Show notes Go to the FSR home page for info on Sarcoidosis Awareness Month. https://www.stopsarcoidosis.org/ John's Story from the Aircraft Carrier: https://www.youtube.com/watch?v=tgRDhHf60XY How to take the Veterans survey: Log in to your FSR-SARC Patient Registry account. Go to your Dashboard or Surveys/Studies tab. Look for the Military Veterans Survey and click “Start” to begin. Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey. https://www.stopsarcoidosis.org/patient-registry/   Support Royce Robertson: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc   MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me  [email protected] #sarcoidosis #sarcoidosisawareness #particulatematter                           

April is Sarcoidosis Awareness month, and that's something to sing about.  And walk about.  And talk about.  And so much more.  In this podcast, I'll be speaking with Tricha Shivas, Chief of Staff and Strategy at the Foundation for Sarcoidosis Research, and Kate Anistasia, Director of Global Patient Programs.  They have a whole menu of options that will excite you when it comes to way to celebrate and participate in Sarcoidosis Awareness month -- including a brief sing-along with the Sarc Fighter theme song, Zombie.  This is gonna be fun.  So listen in and prepare to get moving to make people See Sarcoidosis. Show notes Go to the FSR home page for info on Sarcoidosis Awareness Month. https://www.stopsarcoidosis.org/ Die Laughing:  www.dielaughing.org Support Royce:  https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc How to take the Veterans survey: Log in to your FSR-SARC Patient Registry account. Go to your Dashboard or Surveys/Studies tab. Look for the Military Veterans Survey and click “Start” to begin. Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey. https://www.stopsarcoidosis.org/patient-registry/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me  [email protected] #sarcoidosis #sarcoidosisawareness #particulatematter                         

Dan Keota lives outside Philadelphia.  He needs a double lung transplant.  It's serious.  But Dan is one of those people who find comedy just about anywhere -- even in the darkest throws of his own condition.  Listen as Dan tells the story of how he is turning to humor while he hopes a lung donor becomes available.  Be sure to listen at the end to hear his first on-stage comedy routine!   Show Notes Die Laughing:  www.dielaughing.org Support Royce:  https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc How to take the Veterans survey: Log in to your FSR-SARC Patient Registry account. Go to your Dashboard or Surveys/Studies tab. Look for the Military Veterans Survey and click “Start” to begin. Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey. https://www.stopsarcoidosis.org/patient-registry/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me  [email protected] #sarcoidosis #sarcoidosisawareness #particulatematter                     

Once you receive a diagnosis of Sarcoidosis, you have an answer.  But that raises more questions.  What medications should I take?  Will they work?  Is it the right medication?  What complications could I face?  Do I have the right doctor, or is the right doctor not in my local area?  In many cases sarcoidosis means you need to travel to get the care you need.  Your local doctors may not have enough experience to deal with your case.  That was the situation for Royce Robertson.  He spent tens of thousands of dollars just getting to and from his care.  That's before he paid for traditional medical expenses.  In this episode of the FSR Sarc Fighter podcast, Royce talks about raising money to help people offset the cost of travel.   Show Notes Support Royce:  https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc How to take the Veterans survey: Log in to your FSR-SARC Patient Registry account. Go to your Dashboard or Surveys/Studies tab. Look for the Military Veterans Survey and click “Start” to begin. Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey. https://www.stopsarcoidosis.org/patient-registry/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me  [email protected] #sarcoidosis #sarcoidosisawareness #particulatematter                           

Sarah Bishop has a little extra compared to the rest of us.  Even though she endures daily struggles with Sarcoidosis she pushes herself to the limit.  In this case the limit is an endurance event called The Goat, which takes place in her native New Zealand.  Sarah turned her expedition into a fundraiser for the Foundation for Sarcoidosis Research, and it gained national notoriety and momentum.  In this episode of the FSR Sarc Fighter podcast, Sarah describes the grueling training and how sarcoidosis makes everything just that much more difficult.     Show Notes   Sarah's Facebook Page https://www.facebook.com/groups/1171838998236662/posts/1171929584894270/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me  [email protected] #sarcoidosis #sarcoidosisawareness #particulatematter           

The Foundation for Sarcoidosis Research (FSR) is gaining national traction in the fight against sarcoidosis—championing research funding, patient rights, and access to treatment. In this episode, we dive into how FSR is helping patients receive the care they deserve while empowering the research community to develop new sarcoidosis treatments, therapies, and clinical breakthroughs. We also explore how the Foundation protects and advocates for patients who choose to participate in sarcoidosis clinical trials.  From advocacy to innovation, learn how the Foundation for Sarcoidosis Research is shaping the future of sarcoidosis care. Listen in as FSR CEO Mary McGowan shares the news of a big award for the Foundation. Show Notes Watch the Reveal Video for the Voice of the Patient Award: https://22731230.hs-sites.com/rare-disease-week-rva?ecid=ACsprvuh4hPVM-EpuV6h1LCQIIVcgakGq3L3ldFCfwDvvoWpm8_lTO4p5cCXzrvQH09E0wNjpA6q&utm_campaign=2024 Rare Disease Week   Obituary Elaine Carlin: https://www.millerplonkafuneralhome.com/obituary/ElaineEPratt-Carlin     Here is a list of the members of the FSR Global Sarcoidosis Clinic Alliance- Now 50 members strong! https://www.stopsarcoidosis.org/about-fsr-global-sarcoidosis-clinic-alliance/   If individuals living with sarcoidosis or their caregivers would like to join one of our Community Education Groups, they can find a list of active groups at this link: https://www.stopsarcoidosis.org/fsr-gsca-community-groups/   MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me  [email protected] #sarcoidosis #sarcoidosisawareness #particulatematter