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

Handicap parking tag

Rosiet1976
  • By Rosiet1976 · New reply 4:18 pm
  • Discussion in Living with sarcoidosis · 7 replies
  • Hey everyone, Im just wondering if anyone has a handicapped parking sign? Are we eligible to apply for one? Im curious. Rosie ...

There is still a REAL doctor in the world.

DJ2003
  • By DJ2003 · New reply 4:06 pm
  • Discussion in Emotional support · 2 replies
  • Hi all who care to read something that warmed my heart today. I got another message today from Dr. Rob, that I thought was worth sharing. "I got the following email a few weeks ago (details changed for ...

Start Infusion Therapy Today

Beauregard
  • By Beauregard · New reply 3:59 pm
  • Discussion in Living with sarcoidosis · 4 replies
  • This is my first thread here. Actually, it's the only place I can think of that the people actually have a clue about things related to Sarcoidosis. Please allow me to ramble on for a bit as I don't know ...

Methotrexate problems

Boomop135r
  • By Boomop135r · New reply 3:46 pm
  • Discussion in Symptoms · 10 replies
  • I was diagnosed about 4 months ago with pulmonary sarcoidosis. I have gone through a prednisone treatment that seemed to cause more issues and never helped the underlying issue. I went and found a sarcoid ...

A long time coming

hizfavor
  • By hizfavor · New reply 2:29 pm
  • Journal · 5 replies · Photos
  • I'm a 47 year young female I have two daughter single and I want to talk to people like. Here is some of my story. I became ill around 2004 At first they didn't know what was wrong with me, it took a ...

My own spin on the Ice Bucket Challenge

TheTinMan
  • By TheTinMan · New reply 11:05 am
  • Discussion in Living with sarcoidosis · 7 replies · Photos
  • Like it or hate it, the ALS Ice Bucket Challenge is generating tons of awareness. And it seems a good amount of money, too. Hey, I wish Sarcoidosis had 13 million in the back for research. Anyway, I was ...

SARCOIDOSIS AWARENESS NEEDS TO BE RECOGNIZED AND UNDERSTOOD

MZBIGGREDD
  • By MZBIGGREDD · Posted 9:26 am
  • Journal · 0 replies · Photos
  • "WE NEED A CHALLENGE ON THIS WAR ON SARCOIDOSIS!" Let me be real clear ,,, Sarcoidosis (For the record, Sarcoidosis is pronounced SAR-COY-DOE-SIS) in all it's forms CAN BE a DEATH SENTENCE for anyone ...

IVIG approval with what insurance company?

Bohemia
  • By Bohemia · New reply 9:10 am
  • Discussion in Treatment decisions · 3 replies
  • I currently have BC/BS and I can't get them to pay for squat!!!! Has anyone had better luck with their treatment options getting approved with Aetna? Or Land of Lincoln? Because those are my only two ...

Awareness

jbackpain35
  • By jbackpain35 · New reply 8:33 am
  • Discussion in Living with sarcoidosis · 3 replies
  • I have been living with sarcoidosis for 3 1/2 years and it has changed my life by many ways. I don't allow it to get to me mentally but physically it has and I can't stop that. I went from a person who ...

WE NEED A CHALLENGE!

MZBIGGREDD
  • By MZBIGGREDD · Posted 8:20 am
  • Journal · 0 replies · Photos
  • WE NEED A CHALLENGE IN THIS WAR ON SARCOIDOSIS ...

"It just goes away..." prejudice against people with Sarcoidosis

kulahaw
  • By kulahaw · New reply 5:47 am
  • Discussion in Living with sarcoidosis · 29 replies · Photos
  • If you do a general search on the internet and through PubMed government medical journal articles, the most common introduction to Sarcoidosis as a disease is... "It just goes away on its own..." This ...

Allsup vs. Binder & Binder

jenak76
  • By jenak76 · New reply yesterday at 10:48 pm
  • Discussion in Living with sarcoidosis · 8 replies
  • I have had an attorney from day one of filing my disability over 3 years ago. I am seriously considering finding another one. Can anyone share their experiences with either of these attorneys?!? Jennifer ...

Complain

MommaWesty
  • By MommaWesty · New reply yesterday at 1:54 pm
  • Discussion in Living with sarcoidosis · 9 replies · Photos
  • Just wanted to complain. I try not to but this disease SUCKS. You can feel ok one day and then the next you feel like a MAC truck ran over your entire body. You can have new meds make you feel better ...

update on me

uveitisguy
  • By uveitisguy · New reply yesterday at 10:53 am
  • Discussion in Treatment decisions · 44 replies
  • I got the CPAP machine on 18 june and I feel GREAT now. I learned that I would stop breathing 10 times an hour and that my oxygen level went from 95 at bedtime and got down to 78 in the AM. this explains ...

TOGETHER WE ARE STRONGER

MZBIGGREDD
  • By MZBIGGREDD · New reply yesterday at 5:33 am
  • Journal · 1 reply · Photos
  • AutoImmune Diseases are like Potato Chips. You probably have more than just one. Sarcoidosis in it's many forms has NO cure. The cause of Sarcoidosis is unknown and it can result in death. But giving ...

8/20/2014

kulahaw
  • By kulahaw · New reply yesterday at 2:06 am
  • Journal · 1 reply
  • 8/20/2014 So, where to begin? The Sarcoidosis is back. This happens to about one third of those with Sarcoidosis according to my Pulmonologist. A somewhat different percentage, higher, then what is written ...

Pains

Juhyrek110
  • By Juhyrek110 · New reply August 20, 2014
  • Discussion in Symptoms · 2 replies
  • Hello I have been diagnosed with sarc in my lungs, liver, spleen and lymph nodes. Since the beginning of this in 2011 I have been having bad chest pains behind my breast bone. My dr's have done all heart ...

Vitamin D what you won't find in tabloids, blogs

priscurl
  • By priscurl · New reply August 20, 2014
  • Discussion in Living with sarcoidosis · 9 replies
  • People with granulomatous diseases like sarcoid should be wary of taking D supplements, particularly excessive ones. There are good reasons for this, though not many people are significantly affected ...

This poem is perfect for us

Rosiet1976
  • By Rosiet1976 · New reply August 20, 2014
  • Discussion in Living with sarcoidosis · 7 replies · Photos
  • i found this poem on this site. when i read it i cried. I wanted everyone to see it. Scroll down to see the poem ...

Unbelievable joint pain.

naytureluver
  • By naytureluver · New reply August 20, 2014
  • Discussion in Symptoms · 14 replies
  • Has anyone else experienced joint pain with their Sarcoidosis? I was diagnosed with pulmonary/ lymph node Sarcoidosis in 1998. Besides being tired , lately every joint in my body aches, especially my ...

Log in to see more

Don't have an Inspire account? Sign up now!

Forgot password?

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

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.

Community leaders

Inspire others

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.