Fighting sarcoidosis as well as other rare diseases.
Episodes
Friday Feb 21, 2020
Friday Feb 21, 2020
In this Episode of the Sarc Fighter Podcast, I interview Dr. Simon Hart of the Hull York Medical School in the U.K. Dr, Hart is one of the world's leading authorities on sarcoidosis. I asked him about the troubling aspects of sarcoidosis -- like, why can't we find a cause or a cure, and why is it so difficult to control.
More About Dr. Simon Hart https://www.hyms.ac.uk/about/people/simon-hart
My Sarcoidosis story on WSLS 10 TV https://www.youtube.com/watch?v=qyT3OfR60B4
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
FSR summits 2020 https://www.stopsarcoidosis.org/patient-summits/
My blog about Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
E-mail me carlinagency@gmail.com
Comments (3)
To leave or reply to comments, please download free Podbean or
I suffer panic attacks and anxiety that I believe started initially with not knowing what was going on physically. I have had some unexplained eye issues , complete fatigue , and struggle to continue working at times . I am a medical consultant . Sarcoidosis has changed my life . Some days are great and others are a true struggle . I admire you so much for what you are doing to get information at and seek a cure .
Wednesday May 13, 2020
I now go to a Specialty Clinic at VCU in Richmond , I have mediastinal and spleen involvement per Pet/ CT . I have a loop recorder implant for SVT and Tachycardia , along with a CPAP . I first was out on Prednisone with extreme weight gain . Currently on second try for taking methotrexate as the first time around I had extreme gastric issues . I have 6 grown children and also stepchildren that in total are a group of 12 . I have 13 grandchildren . I myself am going to be 54 .
Wednesday May 13, 2020
I also live in Roanoke , Virginia .... I think that often it takes a long time to get to the true diagnosis . I struggled from 2011 on until I finally had a diagnosis per Mediastinal biopsy in 2017 at UVA after being so exhausted that I was unable to make it all the way home from a contract job I had in Chattanooga , TN . An ER DR in Gatlinburg was the first one to put the pieces together .
Wednesday May 13, 2020
To leave or reply to comments,
please download free Podbean App.