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

EPISODE · Oct 12, 2020 · 1H 18M

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

from Sarc Fighter: Living with Sarcoidosis and other rare diseases · host John Carlin

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  [email protected] 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/      

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  [email protected] 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/

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

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This episode is 1 hour and 18 minutes long.

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This episode was published on October 12, 2020.

What is this episode about?

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," ...

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