Sarc Fighter: Living with Sarcoidosis and other rare diseases

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-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

#sarcoidosis #sarcoidosisawareness #kidney #dermatology

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 sarcoidosis: https://sarcoidosisnews.com/news/corticosteroids-rapidly-improve-kidney-function-renal-sarcoidosis/

The latest from the American Academy of Dermatology:  https://www.stopsarcoidosis.org/dermatology-meeting/

MORE FROM JOHN:

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

#sarcoidosis #sarcoidosisawareness #kidney #dermatology

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 this episode of the FSR Sarc Fighter Podcast, Dan shares his story of life on an aircraft carrier and his battle with sarcoidosis.

 

Show notes

Go to the FSR home page for info on Sarcoidosis Awareness Month. https://www.stopsarcoidosis.org/

John's Story from the Aircraft Carrier: https://www.youtube.com/watch?v=tgRDhHf60XY

How to take the Veterans survey:

Log in to your FSR-SARC Patient Registry account.

Go to your Dashboard or Surveys/Studies tab.

Look for the Military Veterans Survey and click “Start” to begin.

Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey.

https://www.stopsarcoidosis.org/patient-registry/

 

Support Royce Robertson: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

 

MORE FROM JOHN:

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

#sarcoidosis #sarcoidosisawareness #particulatematter

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 and participate in Sarcoidosis Awareness month -- including a brief sing-along with the Sarc Fighter theme song, Zombie.  This is gonna be fun.  So listen in and prepare to get moving to make people See Sarcoidosis.

Show notes

Go to the FSR home page for info on Sarcoidosis Awareness Month. https://www.stopsarcoidosis.org/

Die Laughing:  www.dielaughing.org

Support Royce:  https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

How to take the Veterans survey:

Log in to your FSR-SARC Patient Registry account.

Go to your Dashboard or Surveys/Studies tab.

Look for the Military Veterans Survey and click “Start” to begin.

Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey.

https://www.stopsarcoidosis.org/patient-registry/

MORE FROM JOHN:

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

#sarcoidosis #sarcoidosisawareness #particulatematter

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 Notes

Die Laughing:  www.dielaughing.org

Support Royce:  https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

How to take the Veterans survey:

Log in to your FSR-SARC Patient Registry account.

Go to your Dashboard or Surveys/Studies tab.

Look for the Military Veterans Survey and click “Start” to begin.

Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey.

https://www.stopsarcoidosis.org/patient-registry/

MORE FROM JOHN:

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

#sarcoidosis #sarcoidosisawareness #particulatematter