Sarc Fighter: Living with Sarcoidosis and other rare diseases

Living in a rural area can be tough when you are faced with a rare disease like sarcoidosis.  So Imagine living in remote North Dakota and trying to find a diagnosis and medical care.  That is the case for Brandi Cleaver.  At one point she and her friends held fundraisers in order to get her to Cleveland and the care she needed.  At one point in her life Brandi was one of those people who showed u...

Maybe we could call it "sarcoidosis creep."  For people who have chronic sarc, it seems like if it doesn't get better, it slowly gets worse.  When that happens, people's lives change.  Their activities become more and more curtailed.  Usually because their health is declining.  That's what happened to Joe McCorry of Chicago.  In this episode of the Sarc Fighter podcast, Joe talks about how sarc ha...

Juliet Coffer lives in a cottage in the UK.  By her description, it is a small home, yet her lungs only permit her to take a few steps at a time without running out of oxygen.  In this episode, Juliet describes what it is like to push on when every breath seems to be an adventure.  But not only that -- she has found a way to get around her house in a way that has raised tens of thousands of dollar...

Dr. Matt Baker at Stanford University is studying Sarilumab also known as KEVZARA as a treatment for sarcoidosis.  Sarilumab is already approved for rheumatoid arthritis, but it's anti-inflammatory properties make it a great candidate to treat sarcoidosis as well. In this interview, Dr. Baker explains in layman's terms how Sarilumab works in your body to keep the autoimmune process from creating i...

Rebecca Stanfel has been dealing with sarcoidosis for 17 years.  Not just dealing with it, but at times, barely hanging on.  All of this from a once world class cyclist, wife and mother who happens to have an amazing gift for writing.  Her essays on living with sarcoidosis while struggling with the pandemic have been published in the Washington Post and HuffPost.  During the pandemic, Rebecca move...

Dr. William Damsky, MD, Ph. D.,  is a leading researcher at Yale University.  He is pioneering a study using the off label drug, Xeljanz (say:ZEL-janz) to fight sarcoidosis of the skin, with so far - great success.  Damsky and his team have been able to make disfiguring cases of dermatological sarcoidosis disappear in a handful of cases.  They are now moving ahead with a more robust clinical trial...

Sarcoidosis UK is doing its best to fight sarc in the United Kingdom.  The organization is small but mighty and looking to grow its influence as it raises awareness about the disease and reaches out to patients to offer them help in a confusing sarcoidosis world. In Episode 38 of the Sarc Figher podcast, Leo Casimo, Senior Executive, joins in from London to talk about the efforts of Sarcoidosis UK...

Charlton Harris is a strong voice for Sarcoidosis patients, thanks to his blog, No Tears for Sarcoidosis .  And he knows the Sarc story first hand, as the disease has severely damaged his lungs to the point he needs to stay on oxygen much of the time, and a long walk is a hard day.  Despite all that, Charlton perseveres and continues his work as a professional video editor and producer.  In this e...

With vaccines for COVID-19 now available, Sarcoidosis Warriors are rightfully concerned about how the vaccines might impact them.  Will they interact negatively with my condition or my medications?  Can the vaccine trigger a flare?  Will the vaccine work if I'm immune suppressed?   Sarc Fighter Podcast Host John Carlin interviews two leading doctors to get answers to your questions.  Dr. Peter Spo...

Janet Mockovciak is in her 60's but she may have been fighting Sarcoidosis since she was a teenager!  Janet has been an active outdoor person having traveled to Africa to follow gorillas, and Patagonia where she participated in all kinds of outdoor adventures.  She will talk about how sarcoidosis has forced her to curtail her explorations -- and made her adopt a new normal.  But she isn't giving u...

Nadia Silvera may need a double lung transplant because of sarcoidosis.  Nadia reached out to the Sarc fighter podcast after hearing some of the stories you are telling.  Lioke many people she limped along with Sarcoidosis for years, not realizing how truly serious it might be.  Now she is staring down the face of a serious procedure that may save her life, but will change it forever.  Listen as s...

As part of Sarcoidosis Awareness month, the Foundation for Sarcoidosis Research asked me to host a Town Hall meeting on the topic of prednisone with a panel that included Jessica Reid, a fellow sarc fighter, who has faced years of treatment with prednisone, Dr. Elliott Couser  Chair of FSR's Scientific Advisory Board, and Dr. Sanjay Shukla CEO of aTyr Pharma which is working on a steroid-sparing d...

Sarcoidosis at some level, is inflammation in our bodies -- where we don't want it and where it can cause permanent damage to our organs.  One theory in fighting it, is to eat healthy foods i.e. those foods like sugar, grains and dairy that are known to cause inflammation.  Lindsey Norenberg watched her husband struggle with cardiac sarcoidosis, and she decided to change careers after seeing the h...

As part of Sarcoidosis Awareness month, I wanted to tell you a personal story that happened just today, the day before World Sarcoidosis Awareness day -- in which a very good doctor had no knowledge of sarcoidosis...  And how this might have an impact on my own diagnosis with a new medical problem.  I'll also give you an update on how the Elimination Diet is going and lots of ways you can particip...

April is the month we all re-double our efforts to let the world know we are here.  To tell the world that sarcoidosis exists, that it's a problem.  That it's a disease with no known cause or cure and that it messes with our lives in often unspeakable ways.  Defense number one for this disease is the Foundation for Sarcoidosis Research.  In April the Foundation is pulling out all the stops to shou...

Sarc Fighter Susan Bassi was a very active outdoors person who once thought nothing of hiking 10 miles.  Then Sarcoidosis raised its ugly head, and today she is trying to adjust to a life where she can no longer pursue her greatest joys.  Susan is an Advocate for the Foundation for Sarcoidosis Research, helping other patients find their way through the disease.  And she brings special insight to t...

For KevinMcDevitt, sarcoidosis went from an annoyance in his golf game to a life-threatening heart condition.  In Episode 30 of the Sarc Fighter podcast, Kevin tells about how things went from not so bad to awful very quickly.  Yet he is fighting back and 2021 promises to be much better for him than 2020. Like many people, Kevin has fought his battle on two fronts -- with traditional medicine and...

In Episode 29 of the Sarc Fighter podcast, Susie Torres tells the story of how hard it was to determine what was wrong with her.  Doctors mistook her illness for many other problems -- once even sending her to a psychiatric hospital.                         Note:  I first met and interviewed Susie in early 2020 -- pre-pandemic.  Susie writes that since we did the interview she has had gastric bypa...

Andrena Johnson is fighting back by making a documentary on Sarcoidosis called Project Purple: Mission Sarcoidosis Awareness.  Andrena is a a Hollywood actor and Director who is also fighting neurosarcoidosis.  Frustrated by how it was impacting her career, Andrena produced a 12 minute documentary with essentially no budget.  But thanks to friends in high places in the industry, she was able to ge...

Ryan Norenberg is fighting cardiac sarcoidosis with a one-two punch that includes the use of CBD oil and a holistic diet.  Many people who have appeared on the Sarc Fighter podcast have been frustrated by the lack of choices when it comes to treatment of their disease.  There is a menu of medicines that people are familiar with ranging from prednisone to Remicade to Imuran and others.  For many pe...

In Episode 26 of the Sarc Fighter Podcast, Amy Cobb Describes how sarcoidosis is slowly taking over her body and to a certain extent - her life.  Amy is a mother of three who works full time as a nurse practitioner.  Now -- almost a year into the pandemic, she has been living with sarc, while treating patients fighting COVID-19.  In this episode, Amy talks about how she's been able to handle Sarc...

  In Episode 25 of the Sarc Fighter podcast, patient Tracy Bawtinheimer tells the story of how sarc slowly damaged her heart until she had to make serious life changes.  At one point doctors told her she had a one percent chance of survival.  Yet she has found a way to prevail, even though the difficult learning curve of how to live a life after sarcoidosis.  More on aTyr Pharma: https://www.atyrp...

Frank Rivera is one of the loudest voices in the Sarcoidosis community.  But COVID-19 didn't care.  It hit him with a vengeance, then it came back. In Episode 24 of the Sarc Fighter Podcast, Frank talks about what doctors are calling "Long COVID"  because it just doesn't go away.   Despite his condition, Frank continues to work as a volunteer, helping other sarc patients.  In fact, he recently for...

Dr. Taufiq Ahmad lives a quiet life in the UK.  But slowly he felt that normal activities were wearing him out.  In Episode 23 of the Sarc Fighter podcast, Dr. Ahmad tells the story of how he went from active cyclist, recreational soccer player and general outdoors enthusiast, to a man who spends a lot of time on couch.  Even though he is a physician -- Sarcoidosis was not one of the causes on his...

In this episode of the Sarc Fighter Podcast, Mary McGowan stops by to share more about herself, her extensive background in leadership for healthcare organizations, and her vision for the Foundation for Sarcoidosis Research.   More about Mary and the rest of the staff at FSR https://www.stopsarcoidosis.org/about/staff/ More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song...