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Sarcoidosis: An Overview

By HERWriter
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Sarcoidosis related image Photo: Getty Images

According to the Foundation for Sarcoidosis Research (FSR), "Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease that can affect almost any organ in the body." The FSR also stated, ʺThe classic feature of sarcoidosis is the formation of granulomas, microscopic clumps of inflammatory cells that group together (and look like granules, hence the name).ʺ

The exact cause of sarcoidosis is unknown. However, some research points to a possible virus, bacteria, or chemicals activating the disease. Also, your genetic disposition may play a role.

The disease is rarely fatal. However, more than one-third of those diagnosed with sarcoidosis may develop some form of organ damage.

The FRS website provided the following factoids about sarcoidosis:

• Sarcoidosis is common and affects people worldwide

• Sarcoidosis affects people of any age, race and gender

• Sarcoidosis is most common among adults between the ages of 20 and 40

• Sarcoidosis is most common in African-Americans and those of European (especially Scandinavian) descent

• Two percent of African-Americans may develop the disease during their lifetime

• Most studies suggest women have a higher rate of sarcoidosis

Symptoms may also vary according to race, for example:

• African Americans may have sarcoidosis of the eyes (chronic uveitis)
• Northern Europeans may be prone to painful skin lumps
• Japanese may have sarcoidosis of the heart and eyes

Symptoms of sarcoidosis will vary according to the organ which is affected by the disease. Some symptoms may include:

• The lungs are affected in more than 90 percent of sarcoidosis patients
• More than 90 percent have enlarged lymph nodes
• 25 percent of patients will have skin involvement
• 50 to 80 percent of patients will have granulomas in their liver
• Five to 13 percent of patients have neurologic disease
• One-third of patients will have joint pain
• One-third of patients will have malaise
• 25 percent will have eye issues
• 5 percent will haves sinus issues

The National Heart, Lung, and Blood Institute provided the following information about sarcoidosis and remission:

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EmpowHER Guest

I am tired of articles websites and so on that says sarcoidosis goes in remission and is a benign disease.
What do you mean I am on oxygen, I feel tired am cold my face and my eye on the left side are in pain and sometimes less and sometimes worse.
On Doctor after a lung biopsy told me I had RBILD, I also had NSIP and hypersensitive Pneumonitis. The surgeon make sure you make this biopsy worse while since my DLCO was 45 %. I have malaise all over am cold when I had remacade infusion for the first time it lightened up for a little bit but my last one on the end of July got me so sick I have not gotten over it. I am also under severe stress for all kinds of other reasons that I cannot do anything about they come from the outside. So being in inflammatory disease I guess it does not help.
But I do not understand how one doctor from one biopsy can get a complete different interpretation of what I have.
This doctor specializes in ILD and is the Guru here in Washington State. I still cannot figure out if I really have it or not or if the other doctor was right. So first I thought after though all the docs in the Univerisity of Washington I thought I had it in my liver my diagrpram but now my own says it is only in the lungs and shows in the face. I am tired and feel alone in this battle. The only reason I believed the Dr. in university of Washington is because he explained it had been masquerading in my body for a long time. Looking like other diseases. I used to have. Oh, my I must have had it since I was four then. No it does not go away….. I have never heard of anyone having it go away. And I am on in line support groups. I never have know anyone personally who had horrible disease that makes people think you are faking everything.
I am so tired of this and most people think just take some cordesteriods and you are better yes they also said this when I had my heart attack. But kept getting restenosis in the stents (six of them now). Now I do not know if I get chest pain what I have and go way to much to the emergency room because I also had a duodenal ulcer which made me almost bleed to death. In this rural area some of the emergencies room doc’s do not even know what this disease is. So right away I am pushed of in the cardiac unit. I have malaise all over and people think there is nothing wrong with me except may be the Pulmonologist, family doc and my cardiologist. Get over it they say. I feel ill all over and they say it is sarcoidoisis but it is only in my lungs really and a little bit in my face. I feel cold shilled then get sweats. Right now I wished I was not alive but I have a grandchild coming and it is the only thing that keeps me alive right now. My husband yes, I love him but I am worried he never is going to be home again either. I want him home so they cannot give him the wrong drugs anymore. But fat change this will happen, I love him and I have to stay alive for him also….. Do not tell me to take anti-depressants because they will for sure get me killed as they make me suicidal and will act on it then.

I am sure there are lot worse diseases. But I have this and hurt all over. How?

November 3, 2011 - 10:10pm
EmpowHER Guest

Thank you for providing such thorough and understandable information. People often contact the Foundation for Sarcoidosis Research after reading mis-information elsewhere on the internet, and I applaud you for raising awareness of sarcoidosis and citing your resources.

Julie Catalano
Foundation for Sarcoidosis Research

November 2, 2011 - 3:04pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.


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