Sarc Fighter: Living with Sarcoidosis and other rare diseases

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?

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.”

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  [email protected]

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

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  [email protected]

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

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  [email protected]

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

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

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  [email protected]

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

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  [email protected]

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

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  [email protected]

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

Are you a cyclist?  

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

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.  He even worked to get a billboard in New York's Times Square to fight Sarcoidosis.  I hope you enjoy our talk recorded in February of 2020 at Chevy Chase, Maryland during a meeting of advocates for the Foundation for Sarcoidosis Research.

Frank's Walk https://www.ticketor.com/sarcoidosisofli/event/6th-annual-sarcoidosis-of-long-island-awareness-walk-187357

Frank's website, Sarcoidosis of Long Island  https://www.sarcoidosisofli.org/

Buy Frank's book:  https://www.amazon.com/Walking-Silent-Pain-Autobiography-Resilience/dp/B084QM4ZFV/ref=sr_1_1?crid=H7OUADZISLMH&keywords=walking+in+silent+pain&qid=1581713780&s=books&sprefix=walking+in+silent+pain%2Cstripbooks%2C160&sr=1-1&pldnSite=1

Other mentions from the 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  [email protected]

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

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 Sarcoidosis Research  https://www.stopsarcoidosis.org/

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

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

E-mail me  [email protected]

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 Research https://www.stopsarcoidosis.org/

Contribute to John's KISS account -- Kick in to Stop Sarcoidosis https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis

Upcoming Summits for the Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/patient-summits/