Sarc Fighter: Living with Sarcoidosis and other rare diseases

A new study from Europe takes a look at a clue as to why pulmonary sarcoidosis is worse in some people than others.  And John has a close encounter with five bears.  

Show notes

The study from Sarcoidosis news: https://sarcoidosisnews.com/news/genetic-variant-linked-worsening-lung-disease-sarcoidosis/

MORE FROM JOHN:

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you lik...

New studies show new hope and understanding for battling sarcoidosis.  In one, researchers in the Netherlands looked at the effectiveness of steroids in treating kidney sarcoidosis.

In other news there's seems to be promise in fighting sarcoidosis of the skin.

Show Notes

Mary McGowan's message on YouTube: https://www.youtube.com/watch?v=CGtM5MHSV88

Sarcoidosis News Report on steroids and kidney sarcoidosis: https://sarcoidosi...

It's clear that military veterans are more likely to suffer from Sarcoidosis than the general population.  Dan Frank served as a Navy pilot.  Years later, doctors told him he had sarcoidosis.  While we don't know the cause -- the medical world and indeed the U.S Government, through the PACT Act, recognize that Military service may expose service members to conditions that cause sarcoidosis.  In this episode of t...

April is Sarcoidosis Awareness month, and that's something to sing about.  And walk about.  And talk about.  And so much more.  In this podcast, I'll be speaking with Tricha Shivas, Chief of Staff and Strategy at the Foundation for Sarcoidosis Research, and Kate Anistasia, Director of Global Patient Programs.  They have a whole menu of options that will excite you when it comes to way to celebrate and parti...

Dan Keota lives outside Philadelphia.  He needs a double lung transplant.  It's serious.  But Dan is one of those people who find comedy just about anywhere -- even in the darkest throws of his own condition.  Listen as Dan tells the story of how he is turning to humor while he hopes a lung donor becomes available.  Be sure to listen at the end to hear his first on-stage comedy routine!

Show Notes

Die Lau...

Once you receive a diagnosis of Sarcoidosis, you have an answer.  But that raises more questions.  What medications should I take?  Will they work?  Is it the right medication?  What complications could I face?  Do I have the right doctor, or is the right doctor not in my local area?  In many cases sarcoidosis means you need to travel to get the care you need.  Your local doctors may not have...

Sarah Bishop has a little extra compared to the rest of us.  Even though she endures daily struggles with Sarcoidosis she pushes herself to the limit.  In this case the limit is an endurance event called The Goat, which takes place in her native New Zealand.  Sarah turned her expedition into a fundraiser for the Foundation for Sarcoidosis Research, and it gained national notoriety and momentum.  In this episode ...

The Foundation for Sarcoidosis Research (FSR) is gaining national traction in the fight against sarcoidosis—championing research funding, patient rights, and access to treatment. In this episode, we dive into how FSR is helping patients receive the care they deserve while empowering the research community to develop new sarcoidosis treatments, therapies, and clinical breakthroughs.

We also explore how the Foundation protects ...

Janet Mockovciak has been through the wringer.  Her sarcoidosis has gone from bad to worse.  She has tried all the medications that most patients have used, but they only seem to last for a brief period of time.  Then they stop.  In the meantime, the sarcoidosis spreads throughout her system.  Despite that, she manages to walk two miles every day, and recently went skiing with an oxygen tank on her back!&nb...

Dr. Mark Mallozzi at National Jewish Health in Denver is examining the airborne particles or "particulate matter" that may play a role in triggering sarcoidosis.  In this episode of the FSR Sarc Fighter Podcast, Dr. Mallozzi details some of the things in the air that we have no idea we are breathing.  He looks at the evidence from the dust at 9-11, to burn pits for veterans to smoke from wildfires -- places where cases of...

Here at the end of 2025, it's time to measure our progress in the fight against Sarcoidosis -- and the news is good.  In this episode of the FSR Sarc Fighter Podcast, Tricha Shivas, the Chief of Staff and Strategy at the Foundation for Sarcoidosis Research, joins me to talk about huge strides in research funding, building the support community, Veterans' support, and even progress with lawmakers in Washington, D.C.  In sh...

A new study out of India shows a bit of crossover between sarcoidosis and lung cancer.  In this episode of the FSR Sarc Fighter podcast, I'll take a look at the study and what it reveals — including a new drug, Metformin, previously used to treat Type 2 Diabetes, that may show promise based on the study's findings.  For what it's worth, I'll also share the terrors of surgery for my ruptured Achilles.  

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Basim Karim is a fighter.  He's battled HIV for more than two decades, has had COVID five times, and now has Sarcoidosis in multiple parts of his body.  Doctors face a special problem with him because he cannot allow his immune system to be too depressed, or he faces consequences even greater than sarcoidosis.  Basim joins me to tell his story.

Show Notes

Basim's Reddit thread: https://www.reddit.com/r/NewToSarcoi...

What if the cause and a potential cure for sarcoidosis were hidden in plain view -- on your skin?   According to research by Dr. Thomad Leung in Philadelphia, that might be the case.  In this episode of the FSR Sarc Fighter podcast, Dr. Leung explains how his team of researchers is using the skin to investigate how the body sends a homing signal to cells that create damaging granulomas in any part of the body, includ...

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:

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 ...

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 p...

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 m...

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.  ...