Sarc Fighter: Living with Sarcoidosis and other rare diseases

Heidi Sedra is a healthcare professional, but that didn't make her path to diagnosis and treatment any easier.  In this episode of the FSR Sarc Fighter Podcast, Heidi shares how sarcoidosis put her in the hospital -- and that's just part of the story.     SHOW NOTES Episode 48 with Dr. Jinny Tavee  https://beatsarc.podbean.com/e/episode-48-dr-jinny-tavee-is-a-neurosarcoidosis-specialist-with-a-uni...

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-sarc...

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...

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 th...

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...

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 Not...

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 enou...

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.  I...

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...

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 he...

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...

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 i...

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 Achill...

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.red...

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...

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://...

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 podcas...

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 sarcoido...

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...

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...

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...

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...

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...

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 mor...

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 pers...