Stop Sarcoidosis Support Community

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

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The Truth....

By kimber810 · New reply 7:03 am
Discussion in Living with sarcoidosis · 31 replies
Along with sickle cell anemia, sarcoidosis is a medical condition or disease epidemic to and indicative of African-Americans, especially African-American females. Sarcoidosis is medically defined as ...

Need some answers

By Kulezich · Posted 6:51 am
Discussion in Treatment decisions · 0 replies
Hi I was diagnosed 2 years ago with sarc it was found after being admitted to hospital with chest pains and finding scarring ony lung . I have been attending a specialist for lung function tests which ...

How quickly life changes...

By YC_76 · New reply 5:24 am
Discussion in Living with sarcoidosis · 4 replies
So, I found out about two months ago that I have Sarcoid... I swear it feels like it came out of nowhere. Of course, that's not the case, but I'd been so busy with life and all the things therein, that ...

Sarcoid and skin issues, pls advise or if any1 has experienced same thing??

By bags93 · New reply 3:46 am
Discussion in Symptoms · 37 replies
Hello All, Hopin for some help or any1 sharing thier xperiences. I have had pulmonary sarcoid for 3yrs now. I have had a positive biopsy for small fiber neuropathy. I am wondering if any1 has sarcoid ...

NEW 7 weeks ago pulmonary sarcoidosis/3weeks ago neurologic

By Scain · New reply 1:28 am
Discussion in Symptoms · 6 replies
This site has been so helpful ! I am a nurse by trade & work in hematology & oncology,atill sarcoidosis is a difficult dx to get someone to really talk to me in depth about it ! I felt very tired a couple ...

What now

By mic06 · New reply 1:00 am
Journal · 3 replies
After an eight year old diagnosis with no symptoms or need for a change in lifestyle, what do I do now? It is hard to consider the next step when I have never had to accommodate for a disease that had ...

When Nightmares Become the New Normal

By rachelca · New reply yesterday at 11:51 pm
Journal · 22 replies
Dude! I have sensed a theme in recent postings about doctors not doing the usual (ignore symptoms, prescribe prednisone and show you the door) but actively calling patients liars and malingerers. I am ...

Vit D

By Shezian · New reply yesterday at 7:14 pm
Discussion in Symptoms · 4 replies
My vitamin D levels are 80. Which is in the normal range. I thought with sarc, it would normally be low. I live in Australia, so this is the Aussie conversion. Sue ...

Lisinopril Versus Hydrochlorothiazide in Obese Hypertensive Patients

By MaryMay · New reply yesterday at 6:23 pm
Discussion in Living with sarcoidosis · 4 replies
My regular doctor just took me off the diuretic and started me on lisinopril. Ny pulmonary doctor was heard to mumble, you should be on lasix. http://hyper.ahajournals.org/content/30/ 1/140.full ...Longitudinal ...

Memory loss

By Cre84 · New reply yesterday at 4:59 pm
Discussion in Symptoms · 25 replies
Hello everyone I have sarc currently affecting my lungs and joints, but in the past week or so my memory has become appalling ie can't remember words, what I'm doing, where I put things, that I'm cooking ...

Calcium Vit D and Sarc

By EDuda · New reply yesterday at 12:25 pm
Discussion in Living with sarcoidosis · 2 replies
How do you know if you are getting too much calcium? What about vit D? Tests to measure? What research can I read ...

Fighting

By Sway069 · New reply yesterday at 12:19 pm
Discussion in Living with sarcoidosis · 3 replies
So you are telling me I have to live with this....I'm still in awe about this whole situation. Denial is long gone and the fight has been in full force. It's crazy because having Sarc turned me into a ...

DRUG INTOLERANT/ ALERGIC TO DRUGS?

By Helga111 · New reply yesterday at 12:10 pm
Journal · 2 replies
I am.....and I AM TRYING TO FIND ANOTHER PERSON IN THE SAME CONDITION TO SEE HOW THEY ARE COPING WITH THIS ....AND NEUROLOGIC SCARCOIDOSIS. ThanX for the contact. helga.loe111@yahoo.com ...

Workers Comp for Sarcoisosis

By gonzaB · New reply yesterday at 10:58 am
Discussion in Living with sarcoidosis · 5 replies
Hello, Has anyone been able to prove that their sarcoisosis was caused by mold or other microbial bacteria? I was diagnosed in November 2011 with sarc in my lungs, stage 2. I have been complaining about ...

Side effects of drugs on the eye

By uveitisguy · New reply yesterday at 10:27 am
Discussion in Treatment decisions · 5 replies
Drug-Induced Ophthalmic Side Effects Drug Side Effects Methotrexate Conjunctivitis, serious visual changes of unknown etiology. Arava (leflunomide Aventis) Blurred vision, cataract, conjunctivitis, eye ...

Working with sarcoidosis?

By AnKe · New reply yesterday at 10:10 am
Discussion in Living with sarcoidosis · 3 replies
Hey all, I'm looking for other people's input on how they manage to balance working with saroidosis? My current background: I work 11 hours a day and while I think that would be tiring for anyone, I am ...

Ludiane

By Ludiane · New reply yesterday at 1:01 am
Discussion in Living with sarcoidosis · 6 replies
Hi, I have just joined this site, I live in South Africa. I would like to know about the stages of Sarcoidosis as my husband has been diagnosed with it. His skin, lungs,eyes (not sight so far), ears and ...

Need some prayers for my neice's daughter - King's Highway is getting Bumpy

By Great-gram · New reply May 19, 2012
Journal · 26 replies
Hi to all - a lot has been happening. I thank God for all my Inspire friends. Right now we are in need of prayer for our neice's daughter. She's somewhere around 12 - not sure, and I keep forgetting to ...

Medication, has anyone ever taken Cellcept for Sarcoidosis?

By tweety5826 · New reply May 19, 2012
Journal · 9 replies
Dear Sarc community, is there anyone out there who is taking or ever took cellcept? I was diagnosed with Interstitual Lung Disease in 2007. After enlarged lymph nodes in chest, neck, abdomen and skin ...

Video of Dr teaching other docs how to be empathetic, caring and compassion

By DoreenC · New reply May 19, 2012
Discussion in Living with sarcoidosis · 2 replies
http://youtu.be/sxnlvwprf_c I thought this was wonderful. It is a physician who talks about what happens to patients when you don't listen, examen them and what is needed for better patient care. Doreen ...

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Help and information from FSR

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.