A dear friend, who just had a beautiful baby about a year ago had been struggling with symptoms for a few years and just got notified that they think it is Relapsing Polychondritis. She is going to the Doctor again this week to see what they recommend. I am hoping she can see Dr. Marcela Ferrada at John Hopkins who is a physician with this diagnosis herself and who has a podcast on a web site I highly recommend.
She is brilliant and working with NIH to develop a fast track to networking patients and trials and help for sufferers who, to date, are being offered chemo and steroids, which we all know do harm to our bodies.
She does mention a website set up for info and support...www.relapsingpolychondritisassociationandsupportfoundation.com
If you have any words of help, please let me know what you took that worked.
Thanks so much. Also what are or were your symptoms?
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