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

Its back

DDsarcoid
  • By DDsarcoid · New reply 1:09 am
  • Journal · 1 reply · Photos
  • I went to the doctor today with hopes of good news and I was hit in the head with a sledge hammer. Doc said my sarcoid was back in full force, wheezing, coughing, boby aches and chest pain. I am back ...

We are all Experts by Experience

Brian
  • By Brian · New reply yesterday at 11:40 pm
  • Journal · 11 replies · Photos
  • Dear members, I am pleased to announced that we have just published, for the third year running, Experts by Experience 2015: A compilation of patients’ stories, a new special report developed in partnership ...

Anyone with multiple autoimmune diseases?

Tranquility28
  • By Tranquility28 · New reply yesterday at 11:32 pm
  • Discussion in Living with sarcoidosis · 5 replies
  • Hi everyone. I was just diagnosed with Autoimmune Neutropenia last week. Its beec causing me to have abnormally low neutrophils (white blood cells). Its become a chronic problem. I also have huypothyroidism ...

Sarcoidosis bronchial lavage and biopsy

Poison
  • By Poison · Posted yesterday at 10:35 pm
  • Discussion in Symptoms · 0 replies
  • It has been quite I while since my last log in....I recently had a bronchoscopy and Lavage....was wondering if any one might be able to help me with my results, I am waiting for my doctor to call but ...

searching for sarc in nwi

Helivesinme
  • By Helivesinme · New reply yesterday at 10:06 pm
  • Journal · 6 replies
  • Hi everyone. Hope all is well sorry I haven't been on in a while. Became stressed when I kept getting reported on here. I have had back surgery on 3 levels. Have screamed and rods in. I live in northwest ...

Overcoming Obstacles of Sarcoidosis

Nana-T
  • By Nana-T · Posted yesterday at 9:33 pm
  • Discussion in Living with sarcoidosis · 0 replies
  • https://www.youtube.com/watch?v=lmEtAxO5 S0o&feature=youtu.be ...

A great Article on Chronic Pain

chaplainstevens
  • By chaplainstevens · New reply yesterday at 8:41 pm
  • Journal · 2 replies
  • http://www.spine-health.com/conditions/d epression/4-tips-help-cope-chronic-pain- and-depression ...

BMW811

BMW811
  • By BMW811 · New reply yesterday at 7:29 pm
  • Discussion in Symptoms · 11 replies
  • I would like to know if any of you experience extreme sleepiness? I don't mean normal sleepiness either. I still have to work, and I'm having the hardest time ever getting up in the morning. I know for ...

Paleo & Sarcoidosis

Marycl
  • By Marycl · Posted yesterday at 7:25 pm
  • Discussion in Living with sarcoidosis · 0 replies
  • I was diagnosed in June of 2012. For 4 weeks they thought it was stage 4 cancer. They finally determined sarcoid following a lung biopsy, a partial thyroidectomy, and a series of other tests. Initial ...

Job must have had Sarcoidosis

chaplainstevens
  • By chaplainstevens · New reply yesterday at 6:12 pm
  • Journal · 20 replies · Photos
  • Today is one of my "I feel like Job" days, My vision is blurred, my head aches, every joint hurts, and I am questioning God like Job did...."why am I still here Lord?" I want to cry but the tears won't ...

4 Verses I Find Comfort In

chaplainstevens
  • By chaplainstevens · New reply yesterday at 5:39 pm
  • Journal · 2 replies
  • Psalms 147:3, “He healeth the broken in heart, and bindeth up their wounds.” Do you want to receive healing from emotional wounds, pain, sorrows, grief, and anguish? It is vital that we take advantage ...

Losing and gaining weight.

leenie50
  • By leenie50 · New reply yesterday at 2:37 pm
  • Discussion in Symptoms · 4 replies
  • I was diagnosed with Sarcoidosis in 2009. Since then I have lost weight 4 different times. I've lost 30 to 75 pounds. Until this last time I've gained it all back. It was after this summer of almost dying ...

Sarcoid and meningitis

Kellycunn
  • By Kellycunn · New reply yesterday at 1:32 pm
  • Discussion in Living with sarcoidosis · 3 replies
  • A year ago I developed meningitis after other infections and water on the brain. My recovery has slowed down and I am still on steroids. A few times at various clinics the doctors seem to think. That ...

Newly diagnosed with Neurosarcoidosis

imzlim
  • By imzlim · New reply yesterday at 9:14 am
  • Discussion in Treatment decisions · 2 replies
  • Hi, I was diagnosed two weeks ago with Neurosarcoidosis. I am in the Columbus OH area and I have been referred to Dr Peter Bachwich. I was hoping someone might have some input about this physician or ...

Sarcoidosis in joints/small fiber neuropathy

Whitmorrow
  • By Whitmorrow · New reply yesterday at 8:33 am
  • Discussion in Living with sarcoidosis · 22 replies
  • Hello! I was diagnosed with sarcoidosis in my joints when I was 19. I am 28 now. I started with insanely swollen and painful ankles. Couldn't walk for a long time. Time made it better. I am lucky to not ...

Newly diagnosed

Pheobe67
  • By Pheobe67 · New reply yesterday at 7:02 am
  • Discussion in Emotional support · 10 replies
  • Hi there. I am Newley diagnosed with sarcoidosis. Nearly died of heart failure and that is how they discovered it. They thought I had a PE in my lungs as I could not breath. It was the 3rd time this sort ...

Vitamin D and crap journalism and blogging!

priscurl
  • By priscurl · Posted yesterday at 6:13 am
  • Discussion in Treatment decisions · 0 replies
  • Vitamin D is a very, very complicated topic concerning the workings of the immune, endocrine, electrolyte and skeletal system. Vitamin D, its enzymes, hormones of interaction, carrier proteins, facets ...

Sunny Malibu's VIP find on Calcium + D in Sarc!!!

priscurl
  • By priscurl · Posted yesterday at 5:33 am
  • Discussion in Living with sarcoidosis · 0 replies
  • I have been banging on about all this since 2008 There's not one thing in it I haven't mentioned on this board, and nothing I disagree with. https://clinicaltrials.gov/ct2/show/NCT0 2155803?term=Sarcoidosis&rank=3 ...

Sickness, Church Folks, and Lonliness

chaplainstevens
  • By chaplainstevens · New reply yesterday at 3:21 am
  • Journal · 51 replies
  • So often people that have a chronic pain and illness are very lonely. Why? I think most people don't realize the mental anquish one goes through living with disabilities and pain. I have Sarcoidosis and ...

Heart transplant option

Starchja
  • By Starchja · New reply March 3, 2015
  • Discussion in Living with sarcoidosis · 10 replies
  • My husband was diagnosed in June with lung and cardiac sarcoidosis. 60 yrs old. Has long history of heart failure. Many questions and issues are ongoing. The subject of heart transplant has come up several ...

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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.