PODCAST

Sarc Fighter: Living with Sarcoidosis and other rare diseases

John Carlin

Fighting sarcoidosis as well as other rare diseases.

health & fitness medicine

All Episodes

01:15:53

Episode 17 aTyr Pharma CEO Sanjay Shukla talks about...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/09/15

aTyr Pharma is working on a drug that could be the answer for many Sarc Fighters -- especially that large percentage fighting pulmonary sarc - or sarcoidosis of the lungs. aTyr CEO Sanjay Shukla joins me for this podcast to talk about how the drug interacts with a patient's body to prevent sarc from damaging the tissues and causing the damage we are so familiar with. The drug, called aTyr1923 is in the second stage of clinical trials. It has shown great promise in mice, but the results in

01:06:30

Episode 16 Mary Morlino Fights Back After Sarc Knocks...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/08/31

Mary Morlino was living a good life. Skiing in Europe. Tennis. She was an aerobics instructor. Then one day she became very sick and it would be years before doctors could diagnose the culprit. Sarc. In Episode 16 Mary shares her story about how she has bounced back and is taking the fight to Sarcoidosis and other rare diseases by working for the #EveryLife Foundation. Listen in as Mary takes you step-by-step through her battle with sarc -- including the time she suffered cardiac arrest in

01:04:42

Episode 15 Reg Alexander Needed a New Heart

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/08/17

Reginald Alexander knew there was something terribly wrong with his heart. But neither he nor his doctors could figure out what it was. Meanwhile, things got worse and worse. Eventually he passed out in a public place and might have died, had he not fallen next to a doctor and a nurse! Eventually they learned that it was sarc -- and that Reg would need a new heart. In Episode 15 Reg recounts the story of the slow decline of his condition until suddenly it was almost too late. Follow his

01:14:21

Episode 14 Barbara Mouradian Fights a two front...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/08/03

Barbara Mouradian and her husband Dan are amazing people. She is fighting sarc in her lungs and her heart, while Dan is raising money by riding his bike thousands of miles. They have a family and busy lives, yet Sarc rears its head several times a year to interrupt their plans. In fact, Barbara never knows when she will have a good day, or when she will need to just stay in bed. Despite it all, they are upbeat and energetic! As to the part about the sharks -- Well, you'll just have to listen.

01:09:24

Episode 13 Angela Frelander talks about how you can...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/07/20

Angela Frelander is the person between you and a cure. Ok -- I won't put it all on her shoulders, but without her, The Foundation for Sarcoidosis Research and all the people working to make our lives better would not have the resources they need to keep going. Angela is the Director of Development for the Foundation. It is her job to raise money in order to keep everything going. COVID-19 has made everything that much more difficult. In this podcast, Angela talks about the challenges and how you

01:09:14

Episode 12: Mark Steier sings the song of Sarcoidosis...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/07/06

Mark Steier is a talented musician. His battle with sarcoidosis has dominated his life to the point he wrote and performed a song, called Zombie to describe the battle. One stanza goes as follows: "Learn to suffer You’ll feel pain someday And learn endurance - Your strength will fade away Dead man walking Trying to keep up the pace Dead man walking Counting down the days." I can tell you that Mark's haunting melody is catchy -- but more than that it resonated with me -- as I'm sure

57:57

Episode 11 Andrea and Reading Wilson -- Founders of...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/06/22

Andrea Wilson knew she had a problem -- but doctors couldn't figure out what it was. Eventually, they discovered it was sarcoidosis. Despite living in a major city with great healthcare and the insurance to pay for it, Andrea struggled. Eventually, she and her husband, Reading took action - founding the Foundation for Sarcoidosis research. Listen as they tell the story of growing from a fledgling concept at their kitchen table, to a multi-million dollar foundation that drives research and

41:23

Episode 10 Kerry Wong Talks about how sarc stole her...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/06/08

Kerry Wong of Westchester, New York has an all too familiar story. Years and years of misdiagnosis followed by the ultimate discovery of sarcoidosis. When it was finally diagnosed, it gave her some answers but not much relief. Note: Kerry had many great fundraisers planned for 2020 that were canceled because of the Coronavirus pandemic -- including a day at Yankee Stadium -- although we discussed that in the interview, I deleted that portion as it was no longer relevant. Kerry's KISS and

01:18:53

Bonus Podcast: Roundtable discussion on Sarcoidosis...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/05/12

Hello Sarc Fighters. In this bonus podcast, we listen to the Sarcoidosis Associated Pulmonary Hypertension (SAPH) Guidelines Roundtable held on Monday, September 30, 2019, alongside the 2019 ERS Congress in Madrid, Spain. Bayer is the original sponsor of the scientific and educational activities held during the event in Madrid. It is presented in conjunction with the Foundation for Sarcoidosis Research and WASOG - the World Association for Sarcoidosis and Other Granulomatous

35:13

Episode 9 COVID-19 & Sarcoidosis: What are the real...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/05/05

Are sarcoidosis patients more likely to get COVID-19 and if they do, will outcomes be worse? For the first time, medical science has an answer to that question. Just in are the results of a study conducted by the University of Cincinnati, Albany Medical Center, and The Foundation for Sarcoidosis Research. The study was headed by Dr. Robert Baughman of the University of Cincinnati who talked to the Sarc Fighter Podcast about his findings. Take the survey:

38:20

Episode 8 Patient Bob Gross tells his sarcoidosis...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/04/28

In this episode, we learn about how Bob Gross, of Maine, has been trying to deal with Sarcoidosis from insurance problems, to prednisone to everything in between. I'll also look at the latest from the medical world as COVID-19 continues to be a problem, especially for people who are immunosuppressed. Webinar on surviving Sarcoidosis in a COVID-19 Crisis https://www.thoracic.org/patients/lung-disease-week/2020/sarcoidosis-week/webinar.php Grant money to help Sarc patients who have lost jobs or

32:04

Episode 7 My Methotrexate issues and Cheryl Bradford...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/04/20

In this episode, I talk about my issues with methotrexate (and ask you to share yours) while Cheryl Bradford of Queens, NY shares the details of how Sarcoidosis has slowly taken over her body to the point she can no longer work. Cheryl's Facebook page https://www.facebook.com/cheryl.bradford.144 Cheryl Bradford Instagram https://www.instagram.com/iamshashe/ Web MD on Methotrexate https://www.webmd.com/drugs/2/drug-3441/methotrexate-anti-rheumatic-oral/details Cycling with Sarcoidosis

01:18:44

Episode 6 The Threat from COVID-19 with Jim Kuhn and...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/04/13

Here on World Sarcoidosis Day the Sarc Fighter podcast looks at how we are all fighting the threat from COVID-19. Sarc patient Jim Kuhn shares the extreme measures he is using to stay safe, while he and Mandy Buchanan also dispense valuable insight on how to stay sane during these times of isolation. The latest from Fauci https://www.nbcnews.com/politics/donald-trump/fauci-earlier-social-distancing-measures-obviously-would-have-saved-more-n1182186 Inspire

33:43

Episode 5 Chasta Posey tells her Sarcoidosis story...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/04/06

Chasta Posey tells her sarcoidosis story in this episode of the Sarc Fighter podcast. Chasta has a compelling story to tell about how sarcoidosis attacked her body and her life at a very young age. She has dealt with blindness, kidney issues, and breathing difficulties just to name a few. Yet through it all, she remains soooo positive. Chasta is an advocate for the Foundation for Sarcoidosis Research. Find her on Facebook at https://www.facebook.com/chasta.posey Chasta's Linked In

01:16:49

Episode 4 Maggie Hudson of FSR on how we are fighting...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/03/23

NOTE: This podcast was recorded in the early days of the caronavirus pandemic. I made several references to the status of the precautions at the time of the recording. They may seem outdated by the time you listen to this. I already know that The Foundation for Sarcoidosis Research has postponed its Chicago summit originally scheduled for April 3-5 to August 30 - September 1. Here is the link. https://www.stopsarcoidosis.org/rescheduled-chicago-patient-summit/ This podcast is an introduction to

57:40

Episode 3 Patient Frank Rivera bares his soul.

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/03/09

Sarcoidosis patient Frank Rivera has one of the most severe cases of Sarc you can imagine. "It's easier to tell you where I don't have it, than where I do," Frank told me during our talk on the podcast. Frank was one a runner. A good one, turning a marathon time of 2:30 and running under a 4-minute mile. Now, he walks with a cane. Despite the setbacks, Frank Rivera is one of the loudest voices in the fight against Sarcoidosis. He organizes a walk on Long Island. He's just published a book.

01:13:56

Episode 2 All About Sarcoidois with Dr. Simon Hart

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/02/21

In this Episode of the Sarc Fighter Podcast, I interview Dr. Simon Hart of the Hull York Medical School in the U.K. Dr, Hart is one of the world's leading authorities on sarcoidosis. I asked him about the troubling aspects of sarcoidosis -- like, why can't we find a cause or a cure, and why is it so difficult to control. More About Dr. Simon Hart https://www.hyms.ac.uk/about/people/simon-hart My Sarcoidosis story on WSLS 10 TV https://www.youtube.com/watch?v=qyT3OfR60B4 The Foundation for

55:38

Episode 1 My Sarcoidosis Story

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/02/08

John Carlin launches the Sarc Fighter podcast, by sharing the story of how sarcoidosis has taken over his life -- and how he is fighting back. From the drugs that worked to those that didn't - and the ones that made his life miserable, John shares the trials and tribulations that people with sarcoidosis face every day. John's bike blog including a series of posts on cycling with sarcoidosis. www.carlinthecyclist.com The Foundation for Saroidosis

05:03

Sarc Fighter Trailer

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/01/19

This is the trailer for the Sarc Fighter podcast

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Sarc Fighter: Living with Sarcoidosis and other rare diseases

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