PODCAST

Sarc Fighter: Living with Sarcoidosis and other rare diseases

John Carlin

Fighting sarcoidosis as well as other rare diseases.

health & fitness medicine

All Episodes

01:01:02

Episode 36 | Sarc Fighter Janet Mockovciak is giving...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2021/05/24

Janet Mockovciak is in her 60's but she may have been fighting Sarcoidosis since she was a teenager! Janet has been an active outdoor person having traveled to Africa to follow gorillas, and Patagonia where she participated in all kinds of outdoor adventures. She will talk about how sarcoidosis has forced her to curtail her explorations -- and made her adopt a new normal. But she isn't giving up! At the end of the recent ski season, she took to the slopes with an oxygen tank in her backpack. Go

01:03:02

Episode 35 | Nadia Silvera may need a double lung...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2021/05/10

Nadia Silvera may need a double lung transplant because of sarcoidosis. Nadia reached out to the Sarc fighter podcast after hearing some of the stories you are telling. Lioke many people she limped along with Sarcoidosis for years, not realizing how truly serious it might be. Now she is staring down the face of a serious procedure that may save her life, but will change it forever. Listen as she tells the story of not wanting to deal with the side effects of the drugs, while not knowing that

01:03:42

Bonus Episode | Sarcoidosis Town Hall: Is Prednisone...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2021/05/03

As part of Sarcoidosis Awareness month, the Foundation for Sarcoidosis Research asked me to host a Town Hall meeting on the topic of prednisone with a panel that included Jessica Reid, a fellow sarc fighter, who has faced years of treatment with prednisone, Dr. Elliott Couser Chair of FSR's Scientific Advisory Board, and Dr. Sanjay Shukla CEO of aTyr Pharma which is working on a steroid-sparing drug that may offer relief for patients so they do not have to endure the terrible side effects from

01:10:07

Episode 34 Lindsey Norenberg on how to eat to beat...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2021/04/26

Sarcoidosis at some level, is inflammation in our bodies -- where we don't want it and where it can cause permanent damage to our organs. One theory in fighting it, is to eat healthy foods i.e. those foods like sugar, grains and dairy that are known to cause inflammation. Lindsey Norenberg watched her husband struggle with cardiac sarcoidosis, and she decided to change careers after seeing the healing effects of proper eating. In this epidose of the Sarc Fighter podcast, Lindsey talks about how

40:28

Episode 33 | John Riffs on an encounter with a Doc...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2021/04/12

As part of Sarcoidosis Awareness month, I wanted to tell you a personal story that happened just today, the day before World Sarcoidosis Awareness day -- in which a very good doctor had no knowledge of sarcoidosis... And how this might have an impact on my own diagnosis with a new medical problem. I'll also give you an update on how the Elimination Diet is going and lots of ways you can participate in Sarcoidosis Awareness Month! FSR's fantastic page that includes the media tool kit

50:59

Episode 32 | April is Sarcoidosis Awareness month! ...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2021/04/05

April is the month we all re-double our efforts to let the world know we are here. To tell the world that sarcoidosis exists, that it's a problem. That it's a disease with no known cause or cure and that it messes with our lives in often unspeakable ways. Defense number one for this disease is the Foundation for Sarcoidosis Research. In April the Foundation is pulling out all the stops to shout it from the rooftops -- and you can help! FSR VP for Research and Strategic Partnerships Tricha

01:14:03

Episode 31 | Susan Bassi's Life slowed to a crawl...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2021/03/29

Sarc Fighter Susan Bassi was a very active outdoors person who once thought nothing of hiking 10 miles. Then Sarcoidosis raised its ugly head, and today she is trying to adjust to a life where she can no longer pursue her greatest joys. Susan is an Advocate for the Foundation for Sarcoidosis Research, helping other patients find their way through the disease. And she brings special insight to the task because she is living it. Listen in as she talks about how sarc showed up in her joints and

01:10:33

Episode 30 Kevin McDevitt's sarcoidosis spread from...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2021/03/15

For KevinMcDevitt, sarcoidosis went from an annoyance in his golf game to a life-threatening heart condition. In Episode 30 of the Sarc Fighter podcast, Kevin tells about how things went from not so bad to awful very quickly. Yet he is fighting back and 2021 promises to be much better for him than 2020. Like many people, Kevin has fought his battle on two fronts -- with traditional medicine and an adjustment to his diet and lifestyle. In this podcast Keven shares the details of his harrowing

44:00

Episode 29 Susie Torres fights for diagnosis as she...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2021/03/01

In Episode 29 of the Sarc Fighter podcast, Susie Torres tells the story of how hard it was to determine what was wrong with her. Doctors mistook her illness for many other problems -- once even sending her to a psychiatric hospital. Note: I first met and interviewed Susie in early 2020 -- pre-pandemic. Susie writes that since we did the interview she has had gastric bypass surgery and lost 100 lbs! She also writes that her sarcoidosis is in remission, but she is still

01:27:42

Episode 28 Sarc Fighter Andrena Johnson is making a...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2021/02/15

Andrena Johnson is fighting back by making a documentary on Sarcoidosis called Project Purple: Mission Sarcoidosis Awareness. Andrena is a a Hollywood actor and Director who is also fighting neurosarcoidosis. Frustrated by how it was impacting her career, Andrena produced a 12 minute documentary with essentially no budget. But thanks to friends in high places in the industry, she was able to get it on Prime Video where people began watching it. Before long she realized she needed to make a big

01:26:58

Episode 27 Diet and CBD - Can they be effective? ...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2021/02/01

Ryan Norenberg is fighting cardiac sarcoidosis with a one-two punch that includes the use of CBD oil and a holistic diet. Many people who have appeared on the Sarc Fighter podcast have been frustrated by the lack of choices when it comes to treatment of their disease. There is a menu of medicines that people are familiar with ranging from prednisone to Remicade to Imuran and others. For many people, these are only marginally effective. So you ask yourself, "What if I just ate better?" or "Should

01:05:07

Episode 26 Amy Cobb is a Nurse Practitioner treating...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2021/01/18

In Episode 26 of the Sarc Fighter Podcast, Amy Cobb Describes how sarcoidosis is slowly taking over her body and to a certain extent - her life. Amy is a mother of three who works full time as a nurse practitioner. Now -- almost a year into the pandemic, she has been living with sarc, while treating patients fighting COVID-19. In this episode, Amy talks about how she's been able to handle Sarc and a cabinet full of medication while trying to continue as a soccer mom and medical

01:16:07

Episode 25 Tracy Bawtinheimer was a world traveling...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2021/01/04

In Episode 25 of the Sarc Fighter podcast, patient Tracy Bawtinheimer tells the story of how sarc slowly damaged her heart until she had to make serious life changes. At one point doctors told her she had a one percent chance of survival. Yet she has found a way to prevail, even though the difficult learning curve of how to live a life after sarcoidosis. More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If

01:09:08

Episode 24 Sarc Fighter Frank Rivera fights long...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/12/28

Frank Rivera is one of the loudest voices in the Sarcoidosis community. But COVID-19 didn't care. It hit him with a vengeance, then it came back. In Episode 24 of the Sarc Fighter Podcast, Frank talks about what doctors are calling "Long COVID" because it just doesn't go away. Despite his condition, Frank continues to work as a volunteer, helping other sarc patients. In fact, he recently formed a new outreach group called strongerthansarcoidosis.org to help make it easier for people to get

01:06:16

Episode 23 Even doctors can get sarcoidosis. Taufiq...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/12/07

Dr. Taufiq Ahmad lives a quiet life in the UK. But slowly he felt that normal activities were wearing him out. In Episode 23 of the Sarc Fighter podcast, Dr. Ahmad tells the story of how he went from active cyclist, recreational soccer player and general outdoors enthusiast, to a man who spends a lot of time on couch. Even though he is a physician -- Sarcoidosis was not one of the causes on his radar. Ultimately, however it was determined that #sarcoidosis had badly damaged his heart. Looking

01:03:15

Episode 22 Meet Mary McGowan the new CEO of the...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/11/16

In this episode of the Sarc Fighter Podcast, Mary McGowan stops by to share more about herself, her extensive background in leadership for healthcare organizations, and her vision for the Foundation for Sarcoidosis Research. More about Mary and the rest of the staff at FSR https://www.stopsarcoidosis.org/about/staff/ More on aTyr Pharma: https://www.atyrpharma.com/ 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

54:53

Episode 21 Why Sarc is more prevalent in women with...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/11/09

Ozioma Chioma is a postdoctoral fellow at Vanderbilt University. A microbiologist, she is putting her skills to work thanks to a grant from the Foundation for Sarcoidosis Research. Ozi - as she is often called, is looking specifically for a link between hormones in women and sarcoidosis. Her preliminary findings indicate there is such a link. This could lead to a cure or at least a better treatment down the road. Dr. Chioma will talk about her research, how far they have come and what's

01:16:00

Episode 20 Mark Landiak was hiking the Grand Canyon,...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/10/26

Cardiac Sarc Fighter Mark Landiak has had a tough run of it. One day he is feeling great, getting some fresh air with his daughter on a hike most people would never undertake. The next, he isn't sure what's wrong -- but it's not good. In Episode 20 of the Sarc Fighter Podcast, Mark talks about his struggles to get through that day and how it cot worse after that. But not to be held down, Mark has written a book on how he fought sarcoidosis and how you can too. He's also a mega-fundraiser for

01:18:23

Episode 19 Desiree was a cover girl for health ......

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/10/12

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

40:18

Episode 18 Want to Feel Better? Mindy Buchanan...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2020/09/28

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

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Sarc Fighter: Living with Sarcoidosis and other rare diseases

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