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

56:21

Episode 150 | Chris Cermak has hypercalcemia caused...

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

2025/11/04

We've talked about a lot of different ways sarcoidosis can affect the body. But this is the first time we've talked to a patient who has hypercalcemia -- where there is too much calcium in the blood. And yes, it can be caused by sarcoidosis. It's a story Chris Cermak is living with, even though his blood calcium reached dangerously high levels.Show notes: More from the FSR Gala: https://www.stopsarcoidosis.org/25-gala/ Sarcoidosis News Article:

34:30

Episode 149 | A look at Sarcoidosis from 20,000 feet...

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

2025/10/21

A lot of people find the podcast because they are trying to figure out what's going on in their bodies. They know they have sarcoidosis, but they don't know what it is, how serious it is, or whether it will get worse or maybe - go away. Then there's the question of multi-organ involvement. How common is it and which organs are most often impacted? In this episode of the FSR Sarc Fighter podcast, a look at a new report from Sarcoidosis News that takes a deep dive on many of those questions. Also

53:55

Episode 148 | The FMLA Clarification Part 2 - A real...

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

2025/10/06

It's not always easy to participate in a clinical trial. Even if you want to, how do you get the time off from work? Starting in 2025, thanks to the Foundation for Sarcoidosis Research, there is a provision called the FMLA Clarification, which essentially states that you can participate without fear of losing your job. In this episode of the FSR Sarc Fighter Podcast, Dr. Ennis James, a sarcoidosis researcher and physician at the Medical University of South Carolina, and Tricha Shivas, Chief of

68:58

Episode 147 | The FMLA Clarification -- Part 1...

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

2025/09/22

Let's say you or a family member wants to participate in a clinical trial, but the boss doesn't want you to have the time off because of extra visits to the doctor's office. Under new rules spearheaded by the Foundation for Sarcoidosis Research, companies must now allow patients time away from the job without fear of losing their employment. In this special edition of the FSR Sarc Fighter Podcast, FSR CEO Mary McGowan joins me, along with Emily Dickens, Chief of Staff, Head of Government Affairs,

30:23

Episode 146 | A solid dose of perspective and are...

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

2025/09/08

In this episode of the FSR Sarc Fighter Podcast, it's time to think. Borrowing some thoughts from a man who faced a possibly fatal brain condition, I look at how similar his case is to our own -- bearing in mind that he expresses his case so much better than most people can or could. Also, Sarcoidosis News is out with a study showing that Black Women are more likely to develop kidney stones than other groups. Show Notes Eric Markowitz's Essay:

01:06:26

Episode 145 | Scarlett is the youngest sarc patient yet

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

2025/08/25

Scarlette Washlock was diagnosed with sarcoidosis when she was just 12 years old. Her mother, Kelly McBride, had to raise her daughter with all the anguish and uncertainties that come with Sarcoidosis, compounded by Scarlett's youth and her desire to stay active at school. Together they succeeded. Scarlette had a good high school experience and joins me on the podcast from her new freshman digs at Ohio State University, where she hopes a pre-med path is the one she can take. Listen in as

01:07:30

Episode 144 | Cathleen Terrano dances on despite...

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

2025/08/06

Cathleen Terrano has sarcoidosis. It's in her kidneys. In her heart. In her lungs. On her spinal cord. Other places too. And yet she has danced with some famous people and keeps on dancing and teaching dance to people who might otherwise miss out on life's precious moments -- like a father-daughter dance at a wedding. Cathleen rocks bright purple hair so people will ask her about it -- and open a pathway to talk about sarcoidosis. In this episode of the FSR Sarc fighter podcast hear

56:19

Episode 143 | Why Sarc patients MUST exercise and the...

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

2025/07/21

On Episode 143 of the FSR Sarc Fighter Podcast, I have two guests. Taylor Harwood, Senior Research Coordinator for FSR, joins me to explain the new and improved patient registry. Even if you've already registered, there is a small step you need to take to ensure researchers can find and use your valuable information. Also joining me is physical therapist Marion Paetznik, who will tell you why it's so important to get or stay moving if you have sarcoidosis. Show Notes FSR Patient Registry

01:03:51

Episode 142 | Dr. Courtney Montgomery is looking for...

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

2025/07/07

Dr. Courtney Montgomery wants to know what causes sarcoidosis. She's convinced it's in your genes. Working in the clinic at the Oklahoma Medical Research Foundation, she sees patients every week, while she studies the potential link between Sarcoidosis and a person's genetic code. In this episode of the FSR Sarc Fighter Podcast, she goes over the reasons she believes that certain people are more likely than others to develop this rare disease.Show Notes More on Dr. Courtney Montgomery:

38:53

Episode141| A tough patch for me and Royce Roberston...

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

2025/06/23

In this episode Royce Robertson joins me to talk about how he's raising money to make it easier for Sarcoidosis patients to travel to and from their appointments. It can be expensive to travel great distances to the right doctor, as he knows first-hand. Royce and I are also part of a panel discussion on exercise and sarcoidosis coming up at the FSR Summit on June 28. I will also share some personal details about a bit of a difficult time I'm experiencing at a personal level. #sarcoidosis

49:42

Episode 140 | Getting your questions answered at the...

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

2025/06/09

If there is one place to meet other sarcoidosis patients and to get your questions answered, from insurance denials to sex after sarc, it's at the 2025 FSR Global Virtual Sarcoidosis Summit. The Summit is happening on June 28th and 29th. And the deadline to sign up is June 14. Joining me on the show today are Elise Hoover, VP for Research at FSR, and Kristen Vargas, who is the Planning Lead for the event. Together, they will tell you everything you need to know and what to expect at this year's

46:25

Episode 139 | Dr. Sotonye Imadojemu talks about...

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

2025/05/26

In this Episode of the FSR Sarc Fighter Podcast Dr. Sotonye Imadojemu joins me to talk about sarcoidosis of the skin or cutaneous sarcoidosis. It's very common, but we don't always talk about it. sometimes it is it's own problem, and often it represents a hidden issue with sarcoidosis concerning additional organ involvement. Dr. I is an expert working in Boston at Brigham and Women's Hospital.Show Notes Sign up for the FSR Annual Summit on June 28, 29

01:10:10

Episode 138 | Katie Pantea had a hard time even...

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

2025/05/15

Katie Pantea has multi-organ involvement of sarcoidosis. But when it struck her nervous system, doctors struggled to diagnose her as she began to lose her memory of daily events. In this episode of the FSR Sarc Fighter Podcast, Katie talks about how she's been able to fight back and piece together events that initially she could not recall. It also helped that she is a nurse who lives near a sarcoidosis center that could give her the treatment she needed.Show Notes Sign up for the FSR Annual

01:01:20

Episode 137 | Dr. Brandon Moss of the Cleveland...

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

2025/04/28

In this Episode of the FSR Sarc Fighter podcast, Dr. Brandon Moss, Director of the Neuro Sarcoidosis Clinic at the Cleveland Clinic, talks about the unique challenges of neuro sarcoidosis. Dr. Moss also happens to be my doctor. I've told him he can use my situation as a case study for the sake of this discussion. So you may hear a lot about my spinal cord. Hey! It's all for the greater good. also in this episode, it's time to give to FSR. You can participate in a study by NORD -- dealing with

01:18:23

Episode 136 | A big Announcement for John and Sarah...

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

2025/04/14

Sarah Bishop is busier than most people. She is an ambitious runner, she is a police detective, and she loves the outdoors in New Zealand. But she started having trouble doing even normal things. She would get so tired and out of breath that her basic activity was nerly down to nothing. But nobody could figure out what was wrong with her. Sound familiar? It was sarcoidosis. Sarah heard the Sarc Fighter podcast and reached out saying she wanted to share her story in the hope that it would help

58:43

Bonus Episode | Leaning in on equity in Clinical Trials

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

2025/04/07

Bonus Episode of the FSR Sarc Fighter podcast. In this bonus episode of the FSR Sarc Fighter podcast -- a reminder of the fantastic progress that has been made when it comes to making it possible for people to participate in clinical trials. Thanks to the tireless work of the team at the Foundation for Sarcoidosis Research and the support of Mallinckrodt Pharmaceuticals and Boehringer-Ingelheim, it is now much easier to say "Yes" if you want to participate. Thanks to their work, participation is

54:31

Episode 135 | April is Sarcoidosis Awareness Month!

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

2025/03/31

April is Sarcoidosis Awareness Month, and it's time to let people know that we are all "Facing Sarcoidosis Together," which is the theme for 2025. In this edition of the FSR Sarc Fighter podcast, I talk with Cathi Davis, Director of Communication and Marketing for FSR, along with fellow sarc fighters and volunteers Theresa Govan and Susan D'Agostino. Hear about all FSR has planned for April and how sarcoidosis has impacted Susan and Theresa's lives.Show Notes: FSR Virtual Support Group:

53:03

Episode 134 | Dr. Ravi Karra of Duke University...

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

2025/03/17

The Foundation for Sarcoidosis Research recently awarded two grants to further our knowledge of cardiac sarcoidosis. One of them went to Dr. Ravi Karra, MD, MHS, Associate Professor of Medicine and Pathology at Duke University. Dr. Karra is investigating what causes cardiac sarcoidosis, and the best way to treat it. He joins me on the Sarc Fighter Podcast to talk about his findings and his theory as to what might cause sarcoidosis in some people. Show notes: FSR awards two grants for research

32:43

Episode 133 | FSR funds new research and an email...

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

2025/03/03

In this Episode of the FSR Sarc Fighter podcast, Spring has sprung in Virginia, and John is fueling his optimism for the season with news from the Sarcoidosis world, including a rare disease video series that spotlights sarcoidosis and the announcement of some major grants from FSR to Sarcoidosis researchers.Show Notes: Watch the video featuring Kerry Wong and Dr. Al on how to deal with Sarcoidosis and talk about it in a meaningful way. https://bionews.com/keepin-it-rare/ More about the FSR

01:01:11

Episode 132 | Dr. Arthur Yee on the history of...

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

2025/02/17

Dr. Arthur Yee of Hospital for Special Surgery in New York City, believes rheumatologists are uniquely qualified to treat Sarcoidosis -- yet many of them shy away from sarc patients. In this episode of the FSR Sarc Fighter Podcast, Dr. Yee explains why sarc patients can be scary to doctors. He also looks at the history of Sarcoidosis and the treatment patterns that have evolved over time. He also explains what beryllium miners have in common with people who have had tattoos -- and how all of that

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Sarc Fighter: Living with Sarcoidosis and other rare diseases

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