Sarc Fighter: Living with Sarcoidosis and other rare diseases

If there is one place to meet other sarcoidosis patients and to get your questions answered, from insurance denials to sex after sarc, it's at the 2025 FSR Global Virtual Sarcoidosis Summit.  The Summit is happening on June 28th and 29th.  And the deadline to sign up is June 14.  Joining me on the show today are Elise Hoover, VP for Research at FSR, and Kristen Vargas, who is the Planning Lead for...

In this Episode of the FSR Sarc Fighter Podcast Dr. Sotonye Imadojemu joins me to talk about sarcoidosis of the skin or cutaneous sarcoidosis.  It's very common, but we don't always talk about it.  sometimes it is it's own problem, and often it represents a hidden issue with sarcoidosis concerning additional organ involvement.  Dr. I is an expert working in Boston at Brigham and Women's Hospital....

Katie Pantea has multi-organ involvement of sarcoidosis.  But when it struck her nervous system, doctors struggled to diagnose her as she began to lose her memory of daily events.  In this episode of the FSR Sarc Fighter Podcast, Katie talks about how she's been able to fight back and piece together events that initially she could not recall.  It also helped that she is a nurse who lives near a sa...

In this Episode of the FSR Sarc Fighter podcast, Dr. Brandon Moss, Director of the Neuro Sarcoidosis Clinic at the Cleveland Clinic, talks about the unique challenges of neuro sarcoidosis.  Dr. Moss also happens to be my doctor.  I've told him he can use my situation as a case study for the sake of this discussion.  So you may hear a lot about my spinal cord.  Hey!  It's all for the greater good. ...

Sarah Bishop is busier than most people.  She is an ambitious runner, she is a police detective, and she loves the outdoors in New Zealand.  But she started having trouble doing even normal things.  She would get so tired and out of breath that her basic activity was nerly down to nothing.  But nobody could figure out what was wrong with her.  Sound familiar?  It was sarcoidosis.  Sarah heard the...

Bonus Episode of the FSR Sarc Fighter podcast.  In this bonus episode of the FSR Sarc Fighter podcast -- a reminder of the fantastic progress that has been made when it comes to making it possible for people to participate in clinical trials.  Thanks to the tireless work of the team at the Foundation for Sarcoidosis Research and the support of Mallinckrodt Pharmaceuticals and Boehringer-Ingelheim,...

April is Sarcoidosis Awareness Month, and it's time to let people know that we are all "Facing Sarcoidosis Together,"  which is the theme for 2025.  In this edition of the FSR Sarc Fighter podcast, I talk with Cathi Davis, Director of Communication and Marketing for FSR, along with fellow sarc fighters and volunteers Theresa Govan and Susan D'Agostino.  Hear about all FSR has planned for April and...

The Foundation for Sarcoidosis Research recently awarded two grants to further our knowledge of cardiac sarcoidosis.  One of them went to Dr. Ravi Karra, MD, MHS, Associate Professor of Medicine and Pathology at Duke University.  Dr. Karra is investigating what causes cardiac sarcoidosis, and the best way to treat it.  He joins me on the Sarc Fighter Podcast to talk about his findings and his theo...

In this Episode of the FSR Sarc Fighter podcast, Spring has sprung in Virginia, and John is fueling his optimism for the season with news from the Sarcoidosis world, including a rare disease video series that spotlights sarcoidosis and the announcement of some major grants from FSR to Sarcoidosis researchers.   Show Notes: Watch the video featuring Kerry Wong and Dr. Al on how to deal with Sarcoid...

Dr. Arthur Yee of Hospital for Special Surgery in New York City, believes rheumatologists are uniquely qualified to treat Sarcoidosis -- yet many of them shy away from sarc patients.  In this episode of the FSR Sarc Fighter Podcast, Dr. Yee explains why sarc patients can be scary to doctors.  He also looks at the history of Sarcoidosis and the treatment patterns that have evolved over time.  He al...

Despite high hopes and promise from the drug Namilumab, Kinevant Sciences is reporting that the drug was not effective in treating Sarcoidosis.  A well executed clinical trail showed that the drug simply didn't make a difference for sarcoidosis patients.  In this episode of the FSR Sarc Fighter Podcast, two of the leaders at Kinevant join me to talk about the results of the clinical trial and to l...

It's early January and I'm starting a new job -- reflecting on both my early days and the days and years ahead -- while pondering what it all means with sarcoidosis lurking in the background.        Show notes: Kerry Wong on The new Netflix show No Good Deed:   https://sarcoidosisnews.com/columns/sarcoidosis-storyline-netflixs-no-good-deed-true-patients/ Kerry Wong appears on Episode 10: https://b...

Sarcoidosis snuck up on Karen Coleman.  A dance instructor, she couldn't figure out why she wasn't keeping up in her jazzercize class.  After plenty of time with doctors and more CAT Scans than she would like, she discovered she was suffering from pulmonary Sarcoidosis.        Show notes: News Release on protection for clinical trial participants: https://www.globenewswire.com/news-release/2024/11...

We are making progress against Sarcoidosis, whether it's new treatments or outreach to patients or even the FDA, the foundation for Sarcoidosis Research is making serious progress.  In this episode of the FSR Sarc Fighter Podcast,  Cathi Davis and Jennifer Bulandr join me to look back at all the advancements we have made in 2024 and they look ahead to what we can expect in 2025.  We will also talk...

Mariza Löb was minding her own business, cooking dinner for her family when suddenly something wasn't right.  In this episode of the FSR Sarc Fighter podcast, Mariza talks about how paramedics took her to the hospital and her journey with sarcoidosis began. #sarcoidosis #sarcoidosis awareness #cardiacsarcoidosis @foundationforsarcoidosisresearch Show notes Sarcoidosis news report on cardiac sarcoi...

In this episode of the FSR Sarc Fighter podcast I share a new study from Japan that compared people with systemic cardiac sarcoidosis -- those people who have cardiac sarc as well as other organ involvement -- with those who have only cardiac involvement.  The research found that if you have it only in your heart it may actually be more serious.  Also, FSR just released information that will give...

In Episode 125 of the FSR Sarc Fighter Podcast, a look into the great success of the Externally Led Patient Focused Drug Development Meeting with the FDA.  John co-hosted the meeting with Mary McGowan, the CEO of the Foundation for Sarcoidosis Research as you - the sarcoidosis community joined in to share your stories with the FDA to let the policy and decision makers know what you are dealing wit...

On October 28th the Sarcoidosis world -- led by the Foundation for Sarcoidosis Research will have perhaps its best chance ever to tell the FDA what's going on with us.  On that day, FSR is leading an event called an Externally Led Patient Focused Drug Development discussion.  On that day from 10 am to 3 pm Patients, caregivers, medical experts and maybe you, will be telling the FDA what our lives...

Stephanie Mizell has good days and bad days.  And she doesn't know what it will be until she wakes up and breathes.  Such is the life of a young mother with sarcoidosis.  Shortly after her diagnosis, Stephanie learned that FSR needed a person with her marketing talents.  She applied for the job -- and now she is helping all of us by spreading the word about sarcoidosis with her professionalism and...

Lindsay Lawrence was the picture of health.  Active, mother of two children, healthy eater. All the things.  But something just wasn't right.  It got worse and worse until her doctor told her that her lungs were being damaged by sarcoidosis.  In the time since diagnosis, she has been searching for the medications that work, while sarcoidosis creeps into other parts of her body.  In this episode of...

The combination of Sarcoidosis and Covid proved too much for Wade Tomlinson.  His lungs were wracked with damage from sarcoidosis.  So when he got covid it was the punch his body couldn't handle and he needed to take drastic action.  Wade got on several waiting lists for a lung transplant and then waited for the call.  In episode 121 of the FSr Sarc Fighter Podcast, Wade recounts the moment the ca...

Dr. Kamal Bharucha is a Pediatrician-Scientist, Clinical Development Leader and Biotech Startup Advisor in the rare disease space.  And suddenly he found himself dealing with a rare disease - sarcoidosis.  He says he was feeling fine and went for a routine check-up and discovered everything was far from fine.  Dr. Bharucha describes his journey through diagnosis and discovery as he fights back aga...

When it comes to sarcoidosis, one of the rarest forms is neurosarcoidosis or sarcoidosis in the nervous system.  That's what Jessica Soules is dealing with.  A long-time fitness instructor, sarc has taken the bounce out of her step.  In addition, Jessica is trying to spread the message of another rare disease that claimed the life of a friend.  In this episode she talks about her own struggles wit...

Zombie is the theme song for the FSR Sarc Fighter podcast.  If you listen, you know.  Shortly after I launched the podcast Mark Steier e-mailed me to say he had sarcoidosis and had written and recorded a song about it.  I didn't expect much.  But the song blew me away, and Mark quickly agreed to allow me to use it as the theme song.  You've been hearing it ever since.  Meanwhile Mark's health has...

Renwick Brutus has an unusual name and a story to match.  He discovered he had sarcoidosis long ago now he's working through the disease and its complications.  Including the time doctors were ready to perform surgery on his brain only to... Well, I'll let Renwick finish the story.        Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc Help FSR fu...