Sarc Fighter: Living with Sarcoidosis and other rare diseases

Desiree West-McCarty was young, beautiful and healthy. So much so that she was on the cover of a magazine with the caption "A picture of Health." Then she started getting headaches. "I was on the beach in Hawaii, and it hurt so bad I cried," Desiree said. Over time she would come to learn that she had neurosarcoidosis in her brain. In Episode 19 of the Sarc Fighter podcast, Desiree details her story, of how things went from headaches to the hospital and more. After we recorded the podcast Desiree emailed the following about prednisone... Shortly after our conversation, I remembered a fact that I had forgotten: I said that at the time of my stroke, I was just taking CellCept, but I forgot that I was also tapering off prednisone at the time. I think I was down to 20 mg/ day. A theory is that the prednisone taper was too fast and that could be what triggered the stroke. After the stroke, they upped my prednisone dosage to 80 mg/day again and did a slow taper over the course of about 9 months. I loathed prednisone, but it helped me in so many ways, too. I definitely have a love-hate relationship with it. Meet Mary McGowan -- the new CEO for the Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/fsr-announces-new-ceo/ Sample agenda for November Summit https://www.eventbrite.com/e/november-virtual-sarcoidosis-patient-education-summit-tickets-109038432888 Do you like 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 You Tube 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 [email protected] 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/

Mindy Buchanan is the Patient Engagement Manager for the Foundation for Sarcoidosis Research. In this episode, she talks about the success of the September virtual summit and how you can participate in the upcoming sarc summit in November. As you may know, in a typical year, Sarcoidosis Warriors (Sarc Fighters!) have the chance to travel to cities across the United States to attend meetings, listen to speakers and meet one another -- All in an effort to become more familiar with the Sarc struggle. This year, thanks to COVID-19, the summits have become virtual. FSR has worked so hard, to make it so that we can all continue our respective battles with the most support possible! More info on the November Summit and how to sign up: https://www.stopsarcoidosis.org/patient-summits/ Meet Mindy! https://www.stopsarcoidosis.org/about/staff/ Sarc and Pregnancy, a new study. https://sarcoidosisnews.com/2020/09/10/sarcoidosis-linked-higher-risk-some-pregnancy-complications-swedish-study-shows/ Sarc Merch from FSR https://www.stopsarcoidosis.org/fsr-sarc-store/ Do you like 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 You Tube 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 [email protected] 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/

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 humans are still undetermined. Why is aTyr willing to take on such an expensive and risky undertaking? How do you try to cure a disease that has no known cause? And why focus all your efforts on a relatively small number of potential patients? I asked Sanjay all those questions, and he had some enlightening answers! More about aTyr https://www.atyrpharma.com/about-life/overview/ Clinical Trials with Atyr1923 https://www.atyrpharma.com/patients/clinical-trials/ Sanjay Shukla Bio https://www.atyrpharma.com/sanjay-s-shukla-m-d-m-s/ Do you like 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 You Tube 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 [email protected] 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/

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 [email protected] 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/

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 challenge here on his Facebook Group. https://www.facebook.com/groups/RegHealthJourney/about Do you like 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 You Tube 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 [email protected] 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/

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. :) Here are some links to Dan's fundraising efforts. Please consider helping him to help the cause! https://www.instagram.com/5000miles.us/ https://www.instagram.com/stopsarcoidosis/ http://www.5000miles.us Thanks also to The White Hot Lizards and Sarc Patient Mark Steier for allowing me to use their song, Zombie as the official music for the Sarc Fighter podcast. 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/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

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 [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

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 [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

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 [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

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 [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

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

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.stopsarcoidosi

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 Harvard Business Review. https://hbr.org/2020/03/that-discomfort-youre-feeling-is-grief?fbclid=IwAR1F_8DAVyZ8pNABoCGxlrJCbwSHHfXnmGXkjDCp5XSmXTyQnTbESeZ7o_o 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/

This is the trailer for the Sarc Fighter podcast