Fighting sarcoidosis as well as other rare diseases.
Episodes
Monday Jul 20, 2020
Monday Jul 20, 2020
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 can help.
Make a donation to the Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/donate/
Other ways to give to FSR https://www.stopsarcoidosis.org/ways-to-give/
Many Thanks to Mark Steier and The White Hot Lizards for allowing their song, Zombie to be the official music of the Sarc Fighter Podcast! Mark is a fellow sarc fighter and you can hear his story in Episode 12 of the Sarc Fighter Podcast!
Here is the YouTube channel for the White Hot Lizards https://www.youtube.com/channel/UCmmkG9P6IaIQ8gGuLvM0G-A
Want a healthier diet Read this post by Charleton Harris https://sarcoidosisnews.com/2020/07/17/healthy-diet-lifestyle-treatment-control-inflammation/
And this by Athena Merritt https://sarcoidosisnews.com/2020/07/07/vegetarian-diet-pain-relief-reduce-inflammation/
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/
Monday Jul 06, 2020
Monday Jul 06, 2020
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/
Monday Jun 22, 2020
Monday Jun 22, 2020
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/
Monday Jun 08, 2020
Monday Jun 08, 2020
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/
Tuesday May 12, 2020
Tuesday May 12, 2020
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:
- Robert Baughman, Internist at University of Cincinnati with specialties in Pulmonary Diseases, Lung Disease, Interstitial Lung Disease https://www.wasog.org/committee/Baughman
- Professor Athol Wells, Consultant and chest physician based at Royal Brompton Hospital https://www.rbht.nhs.uk/specialists/professor-athol-wells
- Professor Marc Humbert, Head of the Pulmonology and Intensive Respiratory Care Department at University of Paris
- Steven D. Nathan, Director of the Advanced Lung Disease Program and director of the Lung Transplant Program at Inova Fairfax Hospital https://www.inova.org/doctors/steven-d-nathan-md
Tuesday May 05, 2020
Tuesday May 05, 2020
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/
Tuesday Apr 28, 2020
Tuesday Apr 28, 2020
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/
Monday Apr 20, 2020
Monday Apr 20, 2020
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/
Sunday Apr 12, 2020
Sunday Apr 12, 2020
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 sarcfighter@gmail.com
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Monday Apr 06, 2020
Monday Apr 06, 2020
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/