Sarc Fighter: Living with Sarcoidosis and other rare diseases

A retired businessman had everything, until doctors told him he had only weeks to live.  It was cancer, not Sarcoidosis.  But this man began posting profound thoughts on a forum.  I have met him and talked about his success in business.  I have an amazing amount of respect for what he's accomplished personally as well as professionally.  So when I read his posts I saw pearls of wisdom that apply t...

Sarcoidosis patient Kristi Hedge is just beginning her journey with Sarcoidosis.  Listen in as she details how she started feeling poorly.  After multiple doctor visits they discovered she had a serious case with Sarc involvement in multiple organs.   Show Notes All about the Summit: https://www.stopsarcoidosis.org/summit-2022/ Contact Mindy: mindy@stopsarcoidosis.org How Efzofitimod works in the...

Every year the Foundation for Sarcoidosis Research presents a summit, where leading experts, patients and caregivers can gather to discuss what's going on with our illness.  It's also a time to learn more about the latest research and to just be with others who get it.  The summit is virtual this year, so you will join on line, but you still get to visit the Exhibit Hall, the plenary sessions, and...

aTyr Pharma is launching a new clinical trial for a drug called Efzofitimod, which has thus far shown significant promise as a drug that reduces dependence on prednisone for pulmonary sarcoidosis patients.  In addition, the drug has also produced positive results in helping patients improve their overall condition and quality of life.  In this episode of the Sarc Fighter Podcast, aTyr CEO Dr. Sanj...

In Episode 64 of the Sarc Fighter podcast Mary McGowan, CEO of the Foundation for Sarcoidosis Research and Tricha Shivas, Chief Strategy Officer talk about an exciting new development that will make it easier to patients to find the right doctor, and for doctors to find the right methods to treat Sarcoidosis.    Show notes The New FSR Initiative https://www.stopsarcoidosis.org/foundation-for-sarco...

When sarcoidosis invades your life and rearranges your priorities, it's hard to cope.  Sometimes it's the little things. Sarcoidosis makes most of us slow down.  For some of us almost to a crawl.  But even while we are slogging along there are ways to be content with our lives. Here's my stab at it. Show notes Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk The FSR Summit: htt...

Garrie Farrow has been fighting sarcoidosis for 15 years, and maybe longer.  It has spread from her lungs to other parts of her body including her ears.  Yet she is still working - and still fighting.  In fact she spends a great deal of time helping other Sarcoidosis patients as well.  In Episode 62 of the Sarc Fighter podcast, Garrie shares the story of how sarcoidosis started out in her lungs, h...

Sarcoidosis patients have shared many stories with me here on the Sarc Fighter podcast.  It got me thinking about expectations.  What did we expect from our lives before sarcoidosis?  What do we expect now?  Do we ever expect to get our old lives back -- and how hard should we try to get there.  Managing expectations can be tough and perhaps frustrating.  But it can also be fulfilling. In Episode...

Jack Boepple is a former Boston marathon runner.  A dedicated Cyclist and a fisherman who disappears into the wilderness for a week every year with his canoe and camping supplies.  But even all of that couldn't prevent sarcoidosis from attacking his heart.  In Episode 60 of the Sarc Fighter podcast, Jack shares the story of how sarcoidosis knocked him back more than a few steps -- and how he never...

Angelica Gauptman's grandmother died from complications of sarcoidosis.  Angelica is trying to figure out why.  She believes it had something do with the combination of Vitamin D and Prednisone.  To be clear there is no clinical evidence that proves a link.  Angelica is a high school senior with more than your average get up and go.  She has undertaken a survey of Sarc patients, and has gotten the...

April is Sarcoidosis Awareness Month!   In this episode of the Sarc Fighter podcast, three leaders from the Foundation for Sarcoidosis Research join me to talk about how the Foundation is working to raise awareness and some money for the fight, and how YOU can participate!  Whether it's taking some extra steps or posting to social media with special hashtags -- it's important to help all of us in...

Sarcoidosis patient Robin Goble once lived an active life that included cycling, hiking and hanging out with her friends while helping to raise two teenage sons.  Then sarcoidosis showed up in her life.  Now she is trying to get past the problems and looking for answers while helping other sarcoidosis patients cope with their problems. Universal Barriers Podcast:  https://www.stopsarcoidosis.org/s...

Dr. Shu-Yi Liao is trying to answer the questions we all have about sarcoiodosis. How does it move within our bodies? And why do some people get it and others not?  Beyond that, what can be done to stop or prevent the disease?     Show Notes More about Dr. Shu-Yi Liao: https://www.nationaljewish.org/doctors-departments/providers/physicians/shu-yi-liao Learn about the clinical trial from Novartis:...

Erica Courtenay-Mann was feeling tired all the time.  Beyond tired.  Fatigued and unmotivated, but nobody understood.  It was the onset of sarcoidosis.  After several attempts for treatment -- her doctor noticed her neck didn't look right.  This is her story. Show Notes Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsar...

In this Bonus Episode of the Sarc Fighter podcast, listen in to the special seminar hosted by The Foundation for Sarcoidosis Research as a physician and two sarc patients look at barriers to health care that cannot be overcome unless we all begin to recognize that they are real and won't go away on their own.  The discussion is led by Sarc Fighter host John Carlin.   Show Notes More on Universal B...

As we begin 2022, there is even more reason for hope.  On this episode of the Sarc Fighter podcast, Dr. Divya Patel joins me.  Dr. Patel explains the clinical trial process and describes the trial she is working on at the University of Florida in connection with the Foundation for Sarcoidosis Research. Show notes Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk Sarcoidosis Awar...

Calvin Harris lives in New York City, where he balances his time working as a CFO with running and giving back to his community.  He also writes a popular blog called Run Your Own Race.  And that's what he is doing.  In this episode of the Sarc Fighter podcast, Calvin talks about how he deals with all the medications he is taking to keep his sarcoidosis under control, while he trains for a maratho...

As we begin a new year it's time to take a look at what's ahead in 2022.  Both for ourselves and for the sarcoidosis community at large.  In episode 53 I take a look at what you can do to fight sarc in your own personal battle as you make your new year's resolutions, as well as a look t what researchers, doctors and others are doing to further the fight against the disease, whether it's a new medi...

Amy Whaley is a caregiver.  Her husband, Bobby suffers from a severe case of sarcoidosis.  They are fighting sarc together.  In this episode of the Sarc Fighter podcast, Amy talks about her life, her role as a a caregiver and how life changed shortly after she and Bobby were married.   Amy is the first care giver to appear on the Sarc Fighter podcast.  Like all caregivers, she is essential to the...

Warren D. Robinson is a Television Producer with a law degree to boot.  When his father suddenly died from sarcoidosis he decided he wanted to join the fight to help patients suffering from Sarc.  In this episode of the Sarc Fighter podcast, Warren tells the story of how his father showed no signs of the disease until after his sudden death.  Here was a man who lived to help others and always took...

Adam Bernardi has a great job working in Hollywood.  He's met some big name celebs, and even worked with them.  He's edited or worked on projects you've likely seen.  But none of that could prevent sarcoidosis from attacking his nervous system.  In Episode 49 of the Sarc Fighter podcast, Adam shares the story of how difficult it was for doctors to diagnose his sarcoidosis, and how the disease has...

Dr. Jinny Tavee, the Chief, Division of Neurology at National Jewish Health clinic in Denver is one of the leading experts in the United States when it comes to neurosarcoidosis.  Neuro sarc only affects a small percentage of all sarcoidosis patients, but her approach for treatment extends beyond those who are unfortunate enough to have sarc in their brain or spinal cord.  In Episode 48 of the Sar...

African American Women are three times more likely to suffer from sarcoidosis than whites, and their sarcoidosis mortality rate is 13 times higher than Caucasians and 1.5 times higher than African American men. Why? What is going on with women of color that isn't happening in other groups?  Why are they having a harder time than everyone else.  There are multiple reasons, and the Foundation for Sa...

Lisa Pflug's hand started shaking one day and she couldn't make it stop.  For months neither she nor her doctors could explain it.  Then they started looking at her spinal cord, and they found the problem. In this Episode of the Sarc Fighter Podcast, Lisa shares the story of her journey through sarcoidosis, from her shaking hand to life on prednisone and hopefully a better life thanks to Remicade....

Atyr Pharma has just released the results of a patient trial of a drug called aTyr 1923.  The drug had shown early promise, and the trial more than verified that thinking. Atyr 1923 Not only allowed patients to dose down or even off of Prednisone, but it actually improved lung function in patients -- something that is rarely if ever accomplished. In this episode of the Sarc Fighter podcast, aTyr P...