Sarc Fighter: Living with Sarcoidosis and other rare diseases

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 trea...

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...

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...

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, lis...

aTyr Pharma is working on a drug that could be the answer for many Sarc Fighters -- especially that large percentage fighting pulmonary sarc - or sarcoidosis of the lungs.  aTyr CEO Sanjay Shukla joins me for this podcast to talk about how the drug interacts with a patient's body to prevent sarc from damaging the tissues and causing the damage we are so familiar with.   The drug, called aTyr1923 i...

Mary Morlino was living a good life.  Skiing in Europe.  Tennis.  She was an aerobics instructor.  Then one day she became very sick and it would be years before doctors could diagnose the culprit.  Sarc.   In Episode 16 Mary shares her story about how she has bounced back and is taking the fight to Sarcoidosis and other rare diseases by working for the #EveryLife Foundation.    Listen in as Mary...

Reginald Alexander knew there was something terribly wrong with his heart.  But neither he nor his doctors could figure out what it was.  Meanwhile, things got worse and worse.  Eventually he passed out in a public place and might have died, had he not fallen next to a doctor and a nurse!  Eventually they learned that it was sarc -- and that Reg would need a new heart.  In Episode 15 Reg recounts...

Barbara Mouradian and her husband Dan are amazing people.  She is fighting sarc in her lungs and her heart, while Dan is raising money by riding his bike thousands of miles.   They have a family and busy lives, yet Sarc rears its head several times a year to interrupt their plans.  In fact, Barbara never knows when she will have a good day, or when she will need to just stay in bed.  Despite it al...

Angela Frelander is the person between you and a cure.  Ok -- I won't put it all on her shoulders, but without her, The Foundation for Sarcoidosis Research and all the people working to make our lives better would not have the resources they need to keep going. Angela is the Director of Development for the Foundation.  It is her job to raise money in order to keep everything going. COVID-19 has ma...

Mark Steier is a talented musician.  His battle with sarcoidosis has dominated his life to the point he wrote and performed a song, called Zombie to describe the battle.  One stanza goes as follows: "Learn to suffer You’ll feel pain someday And learn endurance - Your strength will fade away Dead man walking Trying to keep up the pace Dead man walking Counting down the days." I can tell you that Ma...

Andrea Wilson knew she had a problem -- but doctors couldn't figure out what it was.   Eventually, they discovered it was sarcoidosis.  Despite living in a major city with great healthcare and the insurance to pay for it, Andrea struggled.  Eventually, she and her husband, Reading took action - founding the Foundation for Sarcoidosis research.  Listen as they tell the story of growing from a fledg...

Kerry Wong of Westchester, New York has an all too familiar story.  Years and years of misdiagnosis followed by the ultimate discovery of sarcoidosis.  When it was finally diagnosed, it gave her some answers but not much relief.   Note: Kerry had many great fundraisers planned for 2020 that were canceled because of the Coronavirus pandemic -- including a day at Yankee Stadium -- although we discus...

Hello Sarc Fighters.   In this bonus podcast, we listen to the Sarcoidosis Associated Pulmonary Hypertension (SAPH) Guidelines Roundtable held on Monday, September 30, 2019, alongside the 2019 ERS Congress in Madrid, Spain. Bayer is the original sponsor of the scientific and educational activities held during the event in Madrid. It is presented in conjunction with the Foundation for Sarcoidosis R...

Are sarcoidosis patients more likely to get COVID-19 and if they do, will outcomes be worse?  For the first time, medical science has an answer to that question.  Just in are the results of a study conducted by the University of Cincinnati, Albany Medical Center, and The Foundation for Sarcoidosis Research.   The study was headed by Dr. Robert Baughman of the University of Cincinnati who talked to...

In this episode, we learn about how Bob Gross, of Maine, has been trying to deal with Sarcoidosis from insurance problems, to prednisone to everything in between.  I'll also look at the latest from the medical world as COVID-19 continues to be a problem, especially for people who are immunosuppressed. Webinar on surviving Sarcoidosis in a COVID-19 Crisis  https://www.thoracic.org/patients/lung-dis...

In this episode, I talk about my issues with methotrexate (and ask you to share yours) while Cheryl Bradford of Queens, NY shares the details of how Sarcoidosis has slowly taken over her body to the point she can no longer work. Cheryl's Facebook page https://www.facebook.com/cheryl.bradford.144 Cheryl Bradford Instagram https://www.instagram.com/iamshashe/ Web MD on Methotrexate https://www.webmd...

Here on World Sarcoidosis Day the Sarc Fighter podcast looks at how we are all fighting the threat from COVID-19.   Sarc patient Jim Kuhn shares the extreme measures he is using to stay safe, while he and Mandy Buchanan also dispense valuable insight on how to stay sane during these times of isolation.   The latest from Fauci  https://www.nbcnews.com/politics/donald-trump/fauci-earlier-social-dist...

Chasta Posey tells her sarcoidosis story in this episode of the Sarc Fighter podcast. Chasta has a compelling story to tell about how sarcoidosis attacked her body and her life at a very young age.  She has dealt with blindness, kidney issues, and breathing difficulties just to name a few.  Yet through it all, she remains soooo positive.  Chasta is an advocate for the Foundation for Sarcoidosis Re...

NOTE: This podcast was recorded in the early days of the caronavirus pandemic.  I made several references to the status of the precautions at the time of the recording.  They may seem outdated by the time you listen to this.  I already know that The Foundation for Sarcoidosis Research has postponed its Chicago summit originally scheduled for April 3-5 to August 30 - September 1.  Here is the link....

Sarcoidosis patient Frank Rivera has one of the most severe cases of Sarc you can imagine.  "It's easier to tell you where I don't have it, than where I do," Frank told me during our talk on the podcast.  Frank was one a runner.  A good one, turning a marathon time of 2:30 and running under a 4-minute mile.  Now, he walks with a cane.  Despite the setbacks, Frank Rivera is one of the loudest voice...

In this Episode of the Sarc Fighter Podcast, I interview Dr. Simon Hart of the Hull York Medical School in the U.K. Dr, Hart is one of the world's leading authorities on sarcoidosis.  I asked him about the troubling aspects of sarcoidosis -- like, why can't we find a cause or a cure, and why is it so difficult to control.   More About Dr. Simon Hart  https://www.hyms.ac.uk/about/people/simon-hart...

John Carlin launches the Sarc Fighter podcast, by sharing the story of how sarcoidosis has taken over his life -- and how he is fighting back.  From the drugs that worked to those that didn't  - and the ones that made his life miserable, John shares the trials and tribulations that people with sarcoidosis face every day. John's bike blog including a series of posts on cycling with sarcoidosis.  ww...

This is the trailer for the Sarc Fighter podcast