Fighting sarcoidosis as well as other rare diseases.
Episodes
Monday Aug 31, 2020
Monday Aug 31, 2020
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 her kitchen!
You will want to learn more about the EveryLife Foundation, so here are some links.
- Main Website - https://everylifefoundation.org/
- Follow us on social media @everylifeorg
- Stay up to date on how to get involved in advocacy by signing up for our monthly newsletter at www.RareReport.org
- To nominate someone for the Rare Voice Awards – (Nominations close September 8th, 2020). https://rareadvocates.org/rarevoice-awards/
- To submit to the Rare Artist program (Submission Deadline October 1st on Facebook) - https://www.rareartist.org/
If you want to participate in the survey to see how sarcoidosis patients are fairing with COVI-19. Click here: https://www.research.net/r/FSRSARC
Do you like "Zombie" 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
You can listen on YouTube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
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/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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 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/
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/
Monday Mar 23, 2020
Monday Mar 23, 2020
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/
Monday Mar 09, 2020
Monday Mar 09, 2020
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/
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 sarcfighter@gmail.com
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Saturday Feb 08, 2020
Saturday Feb 08, 2020
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/
Sunday Jan 19, 2020