The Stop Sarcoidosis Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

Cleveland clinic

  • By tporte · Posted 7:46 pm
  • Discussion in Treatment decisions · 0 replies
  • Has anyone ever been seen by Dr. PARAMIbil from the Sarc center in Cleveland? Traveling a long distance for the second time and just hoping it won't be another wasted trip. I have pulmonary sarcoidosis ...

fractured vertebraes

  • By cozyjo · Posted 7:12 pm
  • Discussion in Treatment decisions · 0 replies
  • I havbe had several fx vertebrae in the past year. I have always refused kyphoplasty because of the PMMA cement they use in the vertebrae. Has anyone here had any orthopedic surgery of any kind with the ...

Have you been counted? 468 registered so far...

  • By NancyPortland · New reply 6:50 pm
  • Discussion in Living with sarcoidosis · 23 replies
  • We have 468 registered TOTAL. Great to see numbers in Europe grow, plus Middle East and more in Australia too. There are presumed to be 100,000+ of us which means our new patient registry is short on ...

Spouses with health problems

  • By mary2730 · New reply 5:27 pm
  • Discussion in Emotional support · 12 replies
  • Why is it that so many of us have spouses who are also dealing with health problems? Today I'm sitting in the hospital with my hubbie. Been here since 7 last night. He went into A-fib and we rushed to ...

all clear

  • By suzesue · New reply 5:16 pm
  • Discussion in Living with sarcoidosis · 13 replies
  • Well finally had results from brain scan and each all clear so muddled brain and fog consultant says is due to steroids!! Cough virtually gone apart from a bit at night. Still having night sweats but ...

Well crap

  • By Tatiangel · Posted 4:37 pm
  • Journal · 0 replies
  • Completely lost track of this place and so much as happened in the last few years that it would take a small novel to fill ya'll in. Lets just say I'm no better, and may be getting worse. Fun right? anyway ...


  • By MZBIGGREDD · New reply 4:03 pm
  • Journal · 2 replies
  • Stand Up For Sarcoidosis Awareness We have two options, medically and emotionally: give up, or fight like hell. Unite for one, unite for all. After a Sarcoidosis diagnosis — whether it's your own or that ...


  • By Pamijill · New reply 2:41 pm
  • Discussion in Living with sarcoidosis · 13 replies
  • Does anyone else have severe headaches. I have had one for five days now ...

Medicine/vitamins/supplements for Sarcs?

  • By j7653 · Posted 2:17 pm
  • Discussion in Living with sarcoidosis · 0 replies
  • I've had Sarcoidosis in my lungs, lymph nodes, and skin for at least 7 years. I use an AdVairHFA 230 inhaler on a daily basis. I think I get some subtle benefits from it but I'm trying to reduce. I am ...

Being Strong

  • By something22 · New reply 2:13 pm
  • Journal · 1 reply
  • i was diagnosed with sarcoidosis in 1999 or 2000 after i had my last child , i dont really know if i had it while caring her but after i gave birth i was sure i had sarcoidosis . so far been doing well ...

High LDH and "atypical lymphocytes

  • By dareyou2move · New reply 2:01 pm
  • Discussion in Symptoms · 1 reply
  • anyone else here have lab results that show "occasional atypical lymphocytes" or a high LDH level , (this LDH level is 237) I am just undiagnosed and right now differential diagnosis are lymphoma and ...

Free from the Lump Panic x x x

  • By juliek1962 · New reply 1:15 pm
  • Journal · 1 reply
  • Well i can now say that i had my appointment with the Breast Specialist earlier today. I was very relieved and happy when my lump turned out to be a cyst (as i had thought) although you can never be sure ...

Newly Diagnosed

  • By newtothissite · New reply 12:24 pm
  • Discussion in Symptoms · 13 replies
  • I am new here and am recently diagnosed after skin, lung and bone biopsies. My lungs are impacted, and they tell me it is widespread in my bones as well. For the last 6 weeks, I have the constant sensation ...

Prayer Group for Inspire

  • By chaplainstevens · New reply 10:45 am
  • Journal · 107 replies
  • If anyone would like to join me at 6AM for an Inspire prayer time feel free, post your prayer concerns in the Journal and we can all touch and agree and take our request to God. All are welcome to join ...

Falling Thru the Cracks

  • By freezerqueen · New reply 7:00 am
  • Journal · 4 replies
  • I haven't written for quite awhile because quite frankly, every doctors visit has been a waste of time. I recently had hope when I found a new primary care physician, who agreed to order a CT angiogram ...

I thought i was done with surprises.

  • By missy21217 · Posted 6:41 am
  • Journal · 0 replies
  • Hello world...... . Went to neuro last week resident asked whyare you hete? Me did you read the chart. Resident : how are you feeling? Me: did you read the chart after 20 minif giving my medicak history ...

I have not been getting post

  • By trish21 · New reply 1:42 am
  • Journal · 3 replies
  • For whatever reason I have quit getting updates on the "Stop Sarcoidosis" site. I get Inspire new action but no discussions or Journals. I had to go on a comment site to post this. What am I doing wrong ...

NEED Sarcoidosis 2nd OP in Chicago

  • By Onlyme1 · New reply yesterday at 10:54 pm
  • Discussion in Living with sarcoidosis · 8 replies
  • Hi, all, I hope you're having a good day. I've been diagnosed and have seen Dr. Nadera Sweiss for almost a year. I was on an initial three months of Prednisone. My appointments consist of lab work to ...


  • By dippitydoda · New reply yesterday at 9:27 pm
  • Discussion in Symptoms · 4 replies
  • It has been quite a few months since I had my first post on this. I know alot of you feel the way I do.....Dr tells me my ACE is not elevated so my "sarcoidosis" is not active. We all know this doesn't ...

story do far

  • By Curious46 · New reply yesterday at 3:27 pm
  • Journal · 1 reply
  • I have had bronchitis and pneumonias since I was a child in England. I had a 'shadow' on my lung as a child which was diagnosed as a healed inactive TB lesion. I have a strong positive reaction to Mantoux ...

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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About this community

The Stop Sarcoidosis Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Foundation for Sarcoidosis Research, an Inspire trusted partner.