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Sarc Fighter: Living with Sarcoidosis and other rare diseases

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Health & Fitness:Medicine

Episode 19  Desiree was a cover girl for health ... until.

Episode 19 Desiree was a cover girl for health ... until.

2020-10-12
Download

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 her story, of how things went from headaches to the hospital and more.

 

After we recorded the podcast Desiree emailed the following about prednisone...

Shortly after our conversation, I remembered a fact that I had forgotten: I said that at the time of my stroke, I was just taking CellCept, but I forgot that I was also tapering off prednisone at the time. I think I was down to 20 mg/ day. A theory is that the prednisone taper was too fast and that could be what triggered the stroke. After the stroke, they upped my prednisone dosage to 80 mg/day again and did a slow taper over the course of about 9 months. I loathed prednisone, but it helped me in so many ways, too. I definitely have a love-hate relationship with it. 

 

Meet Mary McGowan -- the new CEO for the Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/fsr-announces-new-ceo/

Sample agenda for November Summit https://www.eventbrite.com/e/november-virtual-sarcoidosis-patient-education-summit-tickets-109038432888

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/

 

 

 

view more

More Episodes

Episode 82 | Sam Wassel’s unexplained abdominal pain was sarcoidosis - plus Cycle4Sarc goes public
2023-03-13
Bonus Episode | FSR Town Hall - Uncovering the Future of Sarcoidosis Treatment and Clinical Trials
2023-03-06
Episode 81 | Wade Tomlinson tries to walk away from sarcoidosis.
2023-02-20
Episode 80 | John riffs on sarcoidosis clinical trial opportunities and ... Disney
2023-02-06
Episode 79a | Royce Robertson is Fighting Sarcoidosis from the seat of his bike!
2023-01-23
Episode 79 | Sarc Fighter Royce Robertson bares his sole while looking for a way to help fight Sarcoidosis
2023-01-16
Episode 78 | Dr. John Belperio at UCLA has done a deep dive into the state of Sarcoidosis.
2023-01-02
Episode 77 | Covid Vaccines and Sarcoidosis: Surprising new research from the University of Illinois Chicago
2022-12-19
Episode 76 | Leeanne West is a scientist who discovered Sarcoidosis in her own life.
2022-12-05
Episode 75 | FSR Leaders Dr. Louise Perkins and CEO Mary McGowan on all the current progress.
2022-11-21
Episode 74 | A Doctor and Two Sarc Fighters Urge Black Americans to Join Clinical Trials
2022-11-07
Episode 73 | FSR is looking for a few good volunteers. Maybe you.
2022-10-24
Episode 72 | Sarc Fighter Regina Gordon shares her battle.
2022-10-19
Episode 71 | Andrew Brandt is fighting back - for all of us.
2022-09-26
Episode 70 | Laura Ward thought she had cancer... but it was sarcoidosis.
2022-09-12
Episode 69 | Kinevant Sciences is researching namilumab – a potential new drug for sarcoidosis
2022-08-29
Episode 68 | Profound thoughts from a dying man.
2022-08-15
Episode 67 | Kristi Hedge begins her sarcoidosis journey.
2022-08-01
Episode 66 | Unveiling Possibilities - All about the upcoming Sarcoidosis Summit from the Foundation for Sarcoidosis Research
2022-07-18
Episode 65 | aTyr Pharma is getting closer to a potential breakthrough in treating Sarcoidosis
2022-07-11
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