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

What do you wish your doctor knew?

Brian
  • By Brian · New reply 9:11 am
  • Journal · 548 replies · Photos
  • Dear members, Some of you have seen the story of the schoolteacher who asked students to anonymously finish the sentence, “I wish my teacher knew…” in an effort to get the children to share something ...

IMPD Violated my ADA Civil Rights - Living with an Invisible Disability

tinamarieatl19
  • By tinamarieatl19 · New reply 8:59 am
  • Journal · 26 replies · Photos
  • An Indianapolis Metropolitan Police Department Sergeant Violated my Civil Rights in his refusal to allow me the use of handicap parking accommodations designated for the disabled under ADA. Unfortunately ...

Sarcoidosis Today Magazine!!!!!!!!!!!!!!!!

LovelySnowflake
  • By LovelySnowflake · New reply 8:37 am
  • Discussion in Living with sarcoidosis · 5 replies · Photos
  • OK PAYPAL IS UP AND RUNNING!!!! YOU CAN ORDER YOUR SUBSCRIPTIONS FOR SARCOIDOSIS TODAY MAGAZINE. THANK YOU FOR YOUR PATIENCE AND SUPPORT. GO TO sarcoidosistoday.info or www.sarcoidosistoday.info TO ORDER ...

News on D, Dr Oz and supps

priscurl
  • By priscurl · New reply 7:45 am
  • Discussion in Treatment decisions · 7 replies
  • Hi all, Some news: There's a new study being done in Melbourne, Australia on vitamin D and Lupus. When will they ever get it??? Over time, some study or other has noticed or discovered that Lupus patients ...

I just need to vent

tmcovington
  • By tmcovington · New reply 7:17 am
  • Journal · 5 replies
  • I am 29 sarcoidosis is driving me crazy. I am so sick of feelin like crap everyday. For the last 3 weeks I have been at my worst. I just want to cry. No one understands, I feel like I'm trapped in my ...

Hi

bnyboy
  • By bnyboy · Posted 6:40 am
  • Discussion in Living with sarcoidosis · 0 replies
  • Hi my name is Benny and I live in Melbourne Australia I was diagnosed with sarc back in July last year but specialist believes I probably had it for 6 years I am currently 30 years of age and Married ...

Advice on sarcoidosis UK

Kkwart
  • By Kkwart · New reply 4:15 am
  • Discussion in Living with sarcoidosis · 18 replies
  • Hi Could anyone on here help? My mom has been diagnosed with sarcoidosis for a few years now. However it just seems to be spreading and today has been told that it has spread to her bladder. The doctors ...

Video: Slow Death of Compassion for Chronically ILL

coonhound
  • By coonhound · New reply 4:06 am
  • Journal · 5 replies · Photos
  • Thought these were worth sharing for the disabled who are struggling out there and for those helping someone who is. [There are a couple sites the speakers recommends for advocating]. I get so tired of ...

Vitamin D, Sarcoidosis and Extreme Lethargy

EasternMan
  • By EasternMan · New reply 2:40 am
  • Journal · 2 replies
  • I have been taling Vitamin D for about 2 months and for the last 1 week I have been feeling tired, have increased allergy symptoms like post nasal drip and increased muscle pains at the end of the workinv ...

understanding sarc.

aspanrt
  • By aspanrt · New reply 2:17 am
  • Discussion in Living with sarcoidosis · 1 reply
  • my wife was wondering if puffy joints & joint pain are common with sarc. She was on high dose of predisone for 6 mths now shes down to 5mg a day & is getting puffy ankles if on her feet for a awhile is ...

Bone lesions

katemp
  • By katemp · Posted 1:57 am
  • Discussion in Living with sarcoidosis · 0 replies
  • Just looking for a bit of clarification please. I have systemic sarcoidosis and a bone scan and MRI scan has revealed bone lesions in my hip,pelvis and lower spine. Can this be sarcoidosis or something ...

Better About The Cleveland Clinic

minerva
  • By minerva · New reply 1:28 am
  • Discussion in Treatment decisions · 11 replies
  • So, a while back I posted about my disappointment about the Cleveland Clinic. Some of you very kind people were nice enough to share you experinces and help through PM's and advice all of which were apprciate ...

Disability "art"

WaveWolf
  • By WaveWolf · New reply 12:10 am
  • Discussion in Family and friends · 1 reply · Photos
  • Joseph Viaggi is a very creative and ambitious person, well documented on his YouTube channel WheelzOfFortune. He got the idea to make disability more approachable by seeing it reflected in art. While ...

kinky

kinky
  • By kinky · New reply 12:09 am
  • Discussion in Triggers · 3 replies
  • I have a flare up every spring. Is this common ...

HOT PAINFUL LUMPS ON MY MUSCLES... WHAT?

Sparkle98
  • By Sparkle98 · New reply 12:05 am
  • Discussion in Symptoms · 3 replies
  • Has anyone had painful lumps appear on several muscles that are warm or hot to the touch? This is a new one for me. In getting a biopsy next week and a Gallium Scan also. I'm not worried, I'm trusting ...

Prednisone alternatives

omahadavid
  • By omahadavid · New reply yesterday at 9:24 pm
  • Discussion in Treatment decisions · 1 reply
  • I was diagnosed with sarcoidosis in January and started on 40mg of pred. After 3 months I am losing my mind and cannot stay on this stuff. Does anyone know of any other treatments besides pred? I am going ...

sweats

yanks33
  • By yanks33 · New reply yesterday at 7:11 pm
  • Discussion in Triggers · 32 replies
  • Does anybody else have problem sleeping at night and wake up sweating from top to bottom ...

Sarcoidosis fev1 and TPD

bnyboy
  • By bnyboy · New reply yesterday at 6:25 pm
  • Discussion in Living with sarcoidosis · 1 reply
  • Hi Guys, I am 34 and live in Melbourne I was diagnosed with Sarc back in July last year after along time of misdiagnoses and crappy doctors. I have and FEV1 level of 34 - 38% of predicted. I am a carpenter ...

First visit to the Royal Brompton

lynsey60
  • By lynsey60 · New reply yesterday at 6:00 pm
  • Discussion in Treatment decisions · 16 replies
  • Hi I've had pulmonary sarcoidosis since 2011 and I've just received my first appointment to see a specialist on the 5th March at the Royal Brompton and I was wondering if anyone could offer any help finding ...

Going on 32 hours and counting!

Cragar
  • By Cragar · New reply yesterday at 5:54 pm
  • Discussion in Living with sarcoidosis · 3 replies · Photos
  • Here I sit wide awake going on 32 hours now with no relief in sight (insert uncontrollable laughing). For those of you "Living with Sarcoidosis" who like me, are well into the third phase of the disease ...

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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.