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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 158 | For Sarah Bishop it's an uphill battle with Sarcoidosis
2026-02-23
Episode 157 | The Foundation for Sarcoidosis Research rises to the top
2026-02-09
Episode 156 | Janet Mockovciak has tried everything to get her sarcoidosis under control
2026-01-26
Episode 155 | Dr. Mark Mallozzi is researching a potential cause of Sarcoidosis
2026-01-12
Episode 154 | 2025 Was a great year in the fight against Sarcoidosis
2025-12-27
Episode 153 | A possible connection between Pulmonary Sarcoidosis and Lung Cancer
2025-12-18
Episode 152 Basim Karim is fighting sarcoidosis while being HIV positive
2025-12-01
Episode 151 | Dr. Thomas Leung is using skin research to unravel the mysteries of sarcoidosis
2025-11-17
Episode 150 | Chris Cermak has hypercalcemia caused by sarcoidosis
2025-11-03
Episode 149 | A look at Sarcoidosis from 20,000 feet and when to fire your doctor
2025-10-20
Episode 148 | The FMLA Clarification Part 2 - A real life story of the perils of trying to stay in a clinical trial and how FSR achieved the FMLA Clarification
2025-10-06
Episode 147 | The FMLA Clarification -- Part 1 Allowing patients to use FMLA to participate in clinical trials
2025-09-22
Episode 146 | A solid dose of perspective and are sarcoidosis patients more likely to get kidney stones?
2025-09-08
Episode 145 | Scarlett is the youngest sarc patient yet
2025-08-25
Episode 144 | Cathleen Terrano dances on despite Sarcoidisis
2025-08-06
Episode 143 | Why Sarc patients MUST exercise and the New FSR Patient Registry explained
2025-07-21
Episode 142 | Dr. Courtney Montgomery is looking for the cause of Sarcoidosis.
2025-07-07
Episode141| A tough patch for me and Royce Roberston rides for all of us.
2025-06-23
Episode 140 | Getting your questions answered at the 2025 FSR Global Virtual Sarcoidosis Summit
2025-06-09
Episode 139 | Dr. Sotonye Imadojemu talks about Sarcoidosis of the Skin.
2025-05-26
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