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

My Latest Hospital Visit x x x

  • By juliek1962 · Posted 9:29 am
  • Journal · 0 replies
  • My oh my. It took us a very long time to get to the Hospital today, we had left plenty of time but traffic was so very bad. But hey ho...We got there in the end. Clinic nurses were wonderful, i had rang ...

Chronic low white blood cell count

  • By Tranquility28 · New reply 8:50 am
  • Discussion in Living with sarcoidosis · 17 replies
  • Has anyone had chronic abnormally low white blood cell count? Is there a link to the sarc? Any information you may have on the causes of what could cause it I'd appreciate it. I'm going to see a hematologist ...

What causes stabbing pain under ribs?

  • By Stacy2014 · New reply 8:29 am
  • Discussion in Living with sarcoidosis · 4 replies
  • Does anyone have an explanation for stabbing pains under ribs? I have very random sharp pain in different places under my ribs. It feels like something is there. When I take a breath my lungs press into ...


  • By Gary_RN · New reply 7:57 am
  • Discussion in Emotional support · 17 replies · Photos
  • gFs Henry Cho is funny Blessings, Gary ...

11-23-14 Picture

  • By RonLS · New reply 3:17 am
  • Journal · 5 replies · Photos
  • Wild turkeys, Yellowtail Habitat Area, Lovell, Wyoming The bi-polar weather continues way sub zero last week and up into the mid if not high 40's today. This was taken just a few weeks ago before the ...

11-24-14 Picture

  • By RonLS · Posted 3:07 am
  • Journal · 0 replies · Photos
  • Cabin remnants, Bald Mountain, East of Lovell, Wyoming This was a gorgeous October day on the Big Horn Mountains! We stopped at this cabin on the side of Bald Mountain at literally every corner I found ...

Sarcoidosis treatment with anti-fungal medication–a follow up

  • By plainTRUUS · New reply 1:48 am
  • Discussion in Treatment decisions · 11 replies · Photos
  • Slovenia is doing studies on the use of anti-fungals in sarcoidosis During recent years there have been an increasing number of studies reporting a connection between sarcoidosis and environmental exposure ...

Be Not Afraid!

  • By priscurl · New reply yesterday at 10:17 pm
  • Discussion in Living with sarcoidosis · 14 replies
  • There have been reports in the media in the last couple of days regarding low vitamin D levels being a cause of early death. Cause is not the right word here - associated yes - cause NO! If low vitamin ...

So maybe some good news

  • By stacykids · New reply yesterday at 10:09 pm
  • Discussion in Living with sarcoidosis · 1 reply
  • So they were going to do a 3rd biopsy (open this time) and did a CT Scan, and the lymph nodes are getting smaller. My lung Dr says he expects them to get larger again so it is just a lull in the sarcoidosis ...

My Hair

  • By Nisha1520 · New reply yesterday at 7:50 pm
  • Discussion in Living with sarcoidosis · 7 replies
  • My hair! I just cut off...I went from hair down my back to short above my ear.. Depression I just start cutting... Thank God for a wig ...

11-22-14 Picture

  • By RonLS · New reply yesterday at 6:07 pm
  • Journal · 13 replies · Photos
  • Gnarly tree in the Milky Way, Lovell, Wyoming I went out to play tonight and the stars did not disappoint at all. 30 second exposure was a little too long as I began to get star trails but this tree bare ...

eye socket pain

  • By jenhenry37 · New reply yesterday at 3:14 pm
  • Discussion in Symptoms · 9 replies
  • Hi I've always suffered sinus type discomfort though have only had a diagnosis of sarc in my lungs. Recently the facial pain has got worse & it now seems to be centralised in my eye socket. I'm waiting ...


  • By Peneloped1 · New reply yesterday at 3:11 pm
  • Discussion in Living with sarcoidosis · 3 replies
  • I have uveitis for over 20 years and my eyes have been in remission for three. My Sight is very poor and I have a cataracts which is dense on my right eye. My consultant has refused to remove the cataracts ...


  • By namarray · New reply yesterday at 2:05 pm
  • Discussion in Symptoms · 7 replies
  • I have heard people mention fog head.. PLEASE EXPLAIN also can anybody describe symptons of sarcoidosis in sinus ...

Father gone, but never forgotten!

  • By hansleygirl · New reply yesterday at 10:58 am
  • Discussion in Family and friends · 7 replies
  • Greetings my Sarcoidosis family, I lost my father to this debilitating disease on March 13, 2010 after he suffered with it for over 36 years. The irony behind my father's illness was that he was diagnosed ...

change hospital??

  • By Lizziesmum · New reply yesterday at 9:21 am
  • Journal · 4 replies
  • My daughter (40) has neurosarcoidosis and has been having diagnostic and treatment procedures at Salford Royal in Manchester UK for over a year and has continued to get worse. Her treatment has been wonderful ...

It has been a while...

  • By chaplainstevens · New reply yesterday at 9:17 am
  • Journal · 8 replies
  • Hello folks, I am still praying for you all. The Sarcoidosis is really wearing me out. I have to go to Physical Therapy now because it is in my joints really bad. I can hardly raise my arms above my head ...

A picture positive a day

  • By RonLS · New reply November 22, 2014
  • Journal · 5 replies · Photos
  • Since I posted the other day, I have some comments that it was good to see me posting again. In my posts I added a picture. Since my eyes have been behaving themselves and have not swelled back up, I ...


  • By Nisha1520 · New reply November 22, 2014
  • Discussion in Living with sarcoidosis · 1 reply
  • Sarcoidosis have took my life. I try to pretend but I know this just anit right. Back pain, Just anit right Head pains just anit right Omg I can't breathe if I just walk to right Sarcoidosis ...

New to sarcoidosis - please help

  • By missshella · New reply November 22, 2014
  • Discussion in Symptoms · 10 replies
  • Hello everyone. I have been tentatively diagnosed with sarcoidosis. I went to the ER thinking I was having a heart attack back in August (I'm 40). After lots of tests and normal ECG, they decided to do ...

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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.