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SARCOIDOSIS SURVEY
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Deb Grabetz
Support Team
 

Joined: Fri Mar 9th, 2007
Location: Monroe Michigan, USA
Posts: 1089
Status:  Offline
 Posted: Thu May 27th, 2010 12:53

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WHEN I WAS FIRST DIAGNOSED WITH SARCOID, I JOINED THIS NATIONALLY RECOGNIZED SITE ONLY TO FIND OUT ONCE I STARTED THE MP, I WAS NOT ALLOWED TO DISCUSS MY TREATMENT.  I CONSIDER THIS OUR CONSTITUTIONAL RIGHT TO SHARE WITH OTHERS THE WEALTH OF KNOWLEDGE HERE ON THE MP AND THE FACT THAT MANY ARE RECOVERING WITH THIS TREATMENT.  I READ OTHERS POSTS ON THE FSR SITE AND PEOPLE NEED HOPE!

I FIND IT A SHAME THAT THERE IS NOTHING BETTER BEING OFFERED AS AN OPTION TO SO MANY ILL PEOPLE, THAN IMMUNE COMPROMISING DRUGS! 

PLEASE IF YOU SHARE IN THIS VIEW AND WOULD LIKE TO ALSO POST A QUESTION TO THE FSR TEAM WHY WE ARE NOT ALLOWED AS FSR MEMBERS TO DISCUSS OUR TREATMENT, PLEASE COMPLETE THEIR SURVEY!

https://www.inspire.com/survey/fsr-10th-anniversary/group/stop-sarcoidosis/

PLEASE NOTE THE LINK THAT I HAVE ATTACHED WILL TAKE YOU TO THE FSR SITE.  THERE YOU CAN POST COMMENTS!  THANK YOU!  DEB 



____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4


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