Fighting sarcoidosis as well as other rare diseases.
Episodes
Monday Jun 07, 2021
Monday Jun 07, 2021
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 episode of the Sarc Fighter podcast we meet the man behind the blog and learn about his personal struggle with sarcoidosis.
Want to read all of Charlton's blogs? https://sarcoidosisnews.com/category/no-tears-for-sarcoidosis-a-column-by-charlton-harris/
Sarcoidosis News https://sarcoidosisnews.com/
My probiotic Just Thrive https://justthrivehealth.com/products/probiotic?variant=25256665251940
The Omega 3 product I have been taking https://www.nordicnaturals.com/consumers/
Just so you know I am not affiliated with any of these companies in any way. I talked about these products in the podcast so I'm sharing my information with you. I buy them on line or in the store and pay full price!
Don't forget the upcoming FSR Summit on June 12 &13, 2021. Here is a link to sign up.
https://www.stopsarcoidosis.org/virtual-patient-education-summit-2021/
I recently moderated a conversation for FSR about dealing with prednisone. Almost all of us have dealt with it at one point or another. One doctor on the panel even called it, "poison."
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday Mar 01, 2021
Monday Mar 01, 2021
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 bypass surgery and lost 100 lbs! She also writes that her sarcoidosis is in remission, but she is still battling another rare disease -- possibly Sjogren’s Syndrome (SHOW-grins), which is is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth. The condition often accompanies other immune system disorders, such as rheumatoid arthritis and lupus.
Utah Sarcoidosis Support https://www.facebook.com/groups/2028388207424165/
Nourish by Lindsey: https://www.nourishbylindsey.com/
https://www.healthline.com/nutrition/elimination-diet
Meet Lindsey Norenberg https://www.nourishbylindsey.com/about
Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451
Just Thrive Probiotics https://justthrivehealth.com/
More on aTyr Pharma: https://www.atyrpharma.com/
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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday Feb 01, 2021
Monday Feb 01, 2021
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 people, these are only marginally effective.
So you ask yourself, "What if I just ate better?" or "Should I avoid certain foods?"
Ryan says yes. In fact his wife is now a certified Holistic Nutritionist.
In addition, Ryan has turned to a newer alternative - CBD oil. In this podcast, he explains how he uses this over-the-counter therapy to reduce inflammation.
Give the podcast a listen and see if there isn't an opportunity for you to make some lifestyle adjustments, that could improve your situation.
Additional notes from Ryan!
Lindsey Norenberg's Website www.nourishbylindsey.com
Realm of Caring website https://realmofcaring.org/
Here are a couple related to the Omega6/3 topic:
https://pubmed.ncbi.nlm.nih.gov/12442909/
This is an abstract to a research document that one would need to pay for but you can get the idea of it in the abstract provided.
https://www.healthline.com/nutrition/optimize-omega-6-omega-3-ratio
This is a good one I found geared more towards the layman. It explains the importance while providing some specific information about different foods and sources of omega 6’s and 3’s.
As it is with CBD, it is important to get fish oil from a reliable source. As it is unregulated, there is a potential of high mercury content. Additionally, it is recommended to consume in a true liquid oil form that is stored and shipped at cooled temperatures vs capsules that have been on a store or warehouse shelf for unknown time at unknown temperatures. I currently use Nordic Naturals Ultimate Omega liquid available on Amazon and shipped with a cold pack. I take 2800 mg/daily (1 teaspoon).
The probiotic I take is Ther Biotic complete. This one has 12 strains of bacteria.
Here are some related to cannabinoid therapy:
Cannabinoids-as-novel-anti-inflammatory-drugs.pdf
This one focuses more on THC than CBD specifically but provides a good overview of our endocannabinoid system and how it works.
Here is a group related to inflammation
Research Library - Realm of Caring Foundation
Here is a group of research articles related to cannabinoids and their impact on immune function.
https://store.healthylivingshop.com/
Here is a link to the Cleveland Clinic Healthy Living Shop. The supplements on this site have been vetted by the CC and they consider trustworthy and reliable. However, that doesn’t mean that there are not other good options out there but the buyer needs to beware.
https://www.charlottesweb.com/
This is my trusted source of CBD. There are several other good ones out there as well. They offer different types (gummies, oil, lotions…) and different ratios of CBD/THC ranging from 100% CBD isolate to full plant extract containing up to the .03% federal limit on THC content.
Here is an article I found describing the legislation that established the hemp laws.
Ryan also advises:
.03% THC adds up and is not completely negligible in its effects at higher doses. The Realm of Caring can offer some support here as well. If you do decide to try CBD, I recommend you read up on the “entourage effect”. You can find some articles on the Realm of Caring Research Library page. Basically, studies are limited but there is evidence to believe that CBD is more effective in the presence of THC and other cannabinoids vs isolated by itself.
Charlotte’s Web offers discounted pricing if you register with them and offers further discounts if you subscribe to recurring deliveries. I have found the subscription to be the most cost-effective way to get it.
Monday Dec 07, 2020
Monday Dec 07, 2020
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 radar.
Ultimately, however it was determined that #sarcoidosis had badly damaged his heart.
Looking for previous episodes? https://www.stopsarcoidosis.org/sarc-fighter-podcast/
The Sarc Fighter Podcast is presented in part by a grant from aTyr Pharma.
More on aTyr Pharma: https://www.atyrpharma.com/
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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday Nov 09, 2020
Monday Nov 09, 2020
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 treatment down the road.
Dr. Chioma will talk about her research, how far they have come and what's next.
More on Dr. Chioma https://medicine.vumc.org/person/ozioma-chioma-phd
https://www.linkedin.com/in/oziomachioma/
Also in this podcast, I give you the rundown for the November FSR Summit that will be held virtually this year on November 14. I will be moderating a patient panel discussion that day! Hope to see you there. Whether it's self care, dealing with COVID fears, or trying to eat better -- or meeting other Sarc Fighters there are many reasons to attend.
Check out the summit agenda here: https://www.eventbrite.com/e/november-virtual-sarcoidosis-patient-education-summit-tickets-109038432888
More on aTyr Pharma: https://www.atyrpharma.com/
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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday Oct 26, 2020
Monday Oct 26, 2020
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 has written a book on how he fought sarcoidosis and how you can too. He's also a mega-fundraiser for the Foundation for Sarcoidosis Research.
Mark's Website: https://gettingbetterwithmark.com/
A quick look at Mark's story: https://gettingbetterwithmark.com/story/
Mark's Blog: https://gettingbetterwithmark.com/coping-with-sarcoidosis/
More on aTyr Pharma: https://www.atyrpharma.com/
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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday Sep 14, 2020
Monday Sep 14, 2020
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 is in the second stage of clinical trials. It has shown great promise in mice, but the results in humans are still undetermined. Why is aTyr willing to take on such an expensive and risky undertaking? How do you try to cure a disease that has no known cause? And why focus all your efforts on a relatively small number of potential patients? I asked Sanjay all those questions, and he had some enlightening answers!
More about aTyr https://www.atyrpharma.com/about-life/overview/
Clinical Trials with Atyr1923 https://www.atyrpharma.com/patients/clinical-trials/
Sanjay Shukla Bio https://www.atyrpharma.com/sanjay-s-shukla-m-d-m-s/
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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday Aug 31, 2020
Monday Aug 31, 2020
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 takes you step-by-step through her battle with sarc -- including the time she suffered cardiac arrest in her kitchen!
You will want to learn more about the EveryLife Foundation, so here are some links.
- Main Website - https://everylifefoundation.org/
- Follow us on social media @everylifeorg
- Stay up to date on how to get involved in advocacy by signing up for our monthly newsletter at www.RareReport.org
- To nominate someone for the Rare Voice Awards – (Nominations close September 8th, 2020). https://rareadvocates.org/rarevoice-awards/
- To submit to the Rare Artist program (Submission Deadline October 1st on Facebook) - https://www.rareartist.org/
If you want to participate in the survey to see how sarcoidosis patients are fairing with COVI-19. Click here: https://www.research.net/r/FSRSARC
Do you like "Zombie" 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
You can listen on YouTube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday Jul 20, 2020
Monday Jul 20, 2020
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 made everything that much more difficult. In this podcast, Angela talks about the challenges and how you can help.
Make a donation to the Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/donate/
Other ways to give to FSR https://www.stopsarcoidosis.org/ways-to-give/
Many Thanks to Mark Steier and The White Hot Lizards for allowing their song, Zombie to be the official music of the Sarc Fighter Podcast! Mark is a fellow sarc fighter and you can hear his story in Episode 12 of the Sarc Fighter Podcast!
Here is the YouTube channel for the White Hot Lizards https://www.youtube.com/channel/UCmmkG9P6IaIQ8gGuLvM0G-A
Want a healthier diet Read this post by Charleton Harris https://sarcoidosisnews.com/2020/07/17/healthy-diet-lifestyle-treatment-control-inflammation/
And this by Athena Merritt https://sarcoidosisnews.com/2020/07/07/vegetarian-diet-pain-relief-reduce-inflammation/
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday Jun 08, 2020
Monday Jun 08, 2020
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 discussed that in the interview, I deleted that portion as it was no longer relevant.
Kerry's KISS and Westchester Support Group: https://www.stopsarcoidosis.org/support-group/kiss-westchester-support-group/
Kerry's article with the U.S. pain Foundation https://uspainfoundation.org/blog/pain-awareness-month-always-aware-of-my-chronic-pain/
Kerry's Support Group in Westchester (may not be meeting until COVID-19 pandemic is over) https://www.burke.org/media/news/2019/11/sarcoidosis-support-group/1971
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/
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 sarcfighter@gmail.com
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/