Fighting sarcoidosis as well as other rare diseases.

July 6, 2020

Episode 12: Mark Steier sings the song of Sarcoidosis and tells his own sarc story.

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 it will with you.  In this episode of the Sarc Fighter Podcast, Mark describes his fight with sarc and describes the feelings and emotions that led him to the lyrics.  We will listen to the song in pieces, and then at the end -- in its entirety. 

More than that, Mark is donating the proceeds from Zombie to the Foundation for Sarcoidosis Research. 

If you would like to donate in honor of his efforts, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent to the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

May I suggest that you make a donation and also share the links above on your social media? The more people who know about Sarcoidosis, the easier it will be to raise funds to fight the disease.  Zombie takes our message and puts it in easily consumable terms anyone can understand and relate to.

I've talked to so many people already, and I feel like some portion of each person's story is represented in this song.  For some reason, I just think this song is important. 

Meanwhile, if you would like to contact me all of my info is below.

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

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  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

 

 

June 22, 2020

Episode 11 Andrea and Reading Wilson — Founders of the Foundation for Sarcoidosis Research

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 patient outreach around the world. 

It is a true honor to have Andrea and Reading as guests on the Sarc Fighter podcast.

Here is some quick background on the founding of FSR  https://www.stopsarcoidosis.org/about/

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 carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

June 8, 2020

Episode 10 Kerry Wong Talks about how sarc stole her life

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 Westchester Support Group: https://www.stopsarcoidosis.org/support-group/kiss-westchester-support-group/

Kerry's article with the U.S. pain Foundation  https://uspainfoundation.org/blog/pain-awareness-month-always-aware-of-my-chronic-pain/

Kerry's Support Group in Westchester (may not be meeting until COVID-19 pandemic is over) https://www.burke.org/media/news/2019/11/sarcoidosis-support-group/1971

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

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  sarcfighter@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

May 12, 2020

Bonus Podcast: Roundtable discussion on Sarcoidosis Associated Pulmonary Hypertension from Madrid, Spain

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 Disorders.

Unlike most of the Sarc Fighter podcasts, this one is primarily for physicians. In particular, those working with patients who suffer severe cases of sarcoidosis in the lungs and how to determine if these advanced cases are driven by Sarcoidosis Associated Pulmonary Hypertension.

Panel members include:

May 5, 2020

Episode 9 COVID-19 & Sarcoidosis: What are the real risks? First data with Dr. Robert Baughman

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:  https://redcap.research.cchmc.org/surveys/?s=TJXWAK4FCJ

Here is Dr. Baughman's bio: Dr. Baughman is Professor of Medicine at the University of Cincinnati. After completing undergraduate training at Yale University, he received his medical degree from Case Western Reserve School of Medicine. He joined the Internal Medicine staff at the University of Cincinnati after completing both an Internal Medicine residency and fellowship training in pulmonary diseases at the University of Cincinnati. His major research interests include: the treatment of sarcoidosis and bronchoalveolar lavage. Along with his long time collaborator Dr. Elyse Lower, he has developed several novel treatments for sarcoidosis, including methotrexate, thalidomide, leflunomide, and infliximab. Current studies include treatments for sarcoidosis associated fatigue and pulmonary hypertension due to sarcoidosis. He is on the editorial board of multiple subspecialty journals, and his publications include over 150 original papers and over 70 review articles and/or book chapters. He is on the editorial board of several journals, including American Journal of Respiratory and Critical Care Medicine and Chest. In addition, Dr. Baughman is the recent editor of books on sarcoidosis, interstitial lung disease, and ventilator associated pneumonia. He has been an active member of WASOG since its inception and is President Emeritus.

Here is the New Release from the study:

On April 27, 2020, the Johns Hopkins University Coronavirus Resource Center reported that over 3 million individuals world wide have been infected with COVID-19, including 979,077 in the United States. The vast majority are adults. In the United States, approximately 210 million individuals are above the age of 18. About 200,000 of these people have sarcoidosis.

COVID-19 has changed our world. In sarcoidosis, there have been many questions asked about COVID-19. These include:

  • Is a sarcoidosis patient more likely to get COVID-19 infection?
  • If a sarcoidosis patient becomes infected, does he or she have a worse outcome?
  • Is there increased risk if a patient is taking prednisone or other immunosuppressive drugs?
  • Does taking hydroxychloroquine protect a sarcoid patient from COVID-19?
  • Does race affect the risk or the outcome for COVID-19?

In order to answer these questions, The Foundation for Sarcoidosis and University of Cincinnati launched a questionnaire three weeks ago. They asked their patients to tell them if they had been infected with COVID-19 or not. If infected, they were asked to report what happened.

To date, over 1600 sarcoidosis patients have responded. Of these, only 31 patients, which is less than 2% of the total, reported having COVID-19 and most were able to be treated at home. None required mechanical ventilation.

We were unable to identify an increased risk associated with race, use of prednisone, or treatment with infliximab (Remicade). Also, the use of hydroxychloroquine (plaquenil) was neither protective nor a risk factor for infection.

Dr Robert Baughman, principal investigator of the study, had the following comment: “When COVID-19 began, there was controversy about the additional risks of sarcoidosis and treatments. This information, although only preliminary, found the rate of infection only slightly higher than the national average. Also, sarcoidosis patients with COVID-19 mostly did well, which is what we are seeing for many of our other patients.” Dr. Elyse Lower, co-director of the University of Cincinnati Sarcoidosis center added, “Thank you FSR for working on getting this information together in a timely manner.”

Dr. Marc Judson of Albany Medical Center and co-investigator of the study added the following comment: “Although more sarcoidosis patients need to participate in this survey to reach definite conclusions, these preliminary results are reassuring. These data show no obvious signal of a particularly poor outcome from COVID-19 infection in sarcoidosis patients. Furthermore, these preliminary results do not suggest that steroids or other immunosuppressive medications are placing sarcoidosis patient at a greater risk of a poor outcome. This has been an important undertaking by the FSR.”

This study is ongoing and we need more information now.

https://www.stopsarcoidosis.org/coronavirus/

Other interesting links:

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

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  sarcfighter@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

April 28, 2020

Episode 8 Patient Bob Gross tells his sarcoidosis story and more on sarc & COVID-19

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 other financial means during COVID-19  https://sarcoidosisnews.com/2020/04/22/nord-opens-covid-19-financial-assistance-program-for-rare-disease-community/

Grant money awarded to help determine Sarc vs. Tuberculosis https://sarcoidosisnews.com/2020/04/13/nih-2-million-grant-wayne-state-university-researchers-to-develop-diagnostic-tests-sarcoidosis/?

You're stronger than you think!  https://sarcoidosisnews.com/2020/04/08/nord-rare-disease-advice-covid-19-youre-stronger-than-you-think/

Cleveland Clinic COVID-19 free virtual test https://my.clevelandclinic.org/landing/preparing-for-coronavirus

  

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

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  sarcfighter@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

 

 

April 20, 2020

Episode 7 My Methotrexate issues and Cheryl Bradford tells her sarcoidosis story

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 http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

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  sarcfighter@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

April 12, 2020

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

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 https://www.inspire.com/groups/stop-sarcoidosis/?origin=freshen

20,000 U.S. COVID-19 Deaths... https://www.nbcnews.com/health/health-news/live-blog/coronavirus-live-updates-u-s-surpasses-20-000-deaths-lead-n1182086

April 6, 2020

Episode 5 Chasta Posey tells her Sarcoidosis story from blindness to finding a path to positivity

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 https://www.linkedin.com/in/chasta-posey-03990a80/

Chasta's Instagram https://www.instagram.com/chasta_lafaith/

Caronavirus Covid-19 update for Sarcoidosis patients https://www.stopsarcoidosis.org/coronavirus/

CNN Story on U.S. Open Tennis Courts setting up to fight Covid-19  https://www.cnn.com/2020/03/31/us/us-open-coronavirus-hospital/index.html

Other links associated with the Sarc Fighter Podcast:

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

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  sarcfighter@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

March 23, 2020

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

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 the Foundation for Sarcoidosis Research, which is fighting for funding to support research to beat sarcoidosis.  I interviewed Maggie Hudson, who is the communications manager for the Foundation.  She is extremely knowledgeable about the various aspects of the fight against the disease.  I hope you will enjoy learning more about FSR and the potential for an eventual cure.

Please remember the Sarc Fighter podcast is uploaded every other Monday at 6 a.m.   But, during the month of April, sarcoidosis awareness month, I will be releasing an episode EVERY Monday profiling four people who are fighting sarc every day.

Here is the link to the Foundation for Sarcoidosis Research: https://www.stopsarcoidosis.org/

World Association of Sarcoidosis and Other Granulomatous Disorders https://www.wasog.org/

More on Maggie Hudson: https://www.stopsarcoidosis.org/about/staff/

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  sarcfighter@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Are you a cyclist?  

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/