Health and Psychology

April is National Sarcoidosis awareness month.

Sarcoidosis is an atypical autoimmune disorder that can impact all organs of the body.  It can affect all ages although it is typically diagnosed in people between age 20 and 50.  It is most commonly seen in African Americans and people from Scandanavian backgrounds, although it may impact other ethnic groups.  It's is commonly not diagnosed or is missed as a diagnostic consideration in Caucasians.

Sarcoidosis is often first diagnosed as a result of asthma symptoms that do not respond to treatment.  Caseating granulomas, (immune system cells that have clustered together), in various organs in the body, cause the organs not to function properly. People with a family history of sarcoidosis are at a higher risk for the disease. According to the American Lung Association, 90 percent of sarcoidosis cases affect the lungs, which is called pulmonary sarcoidosis and can interfere with breathing and result in lasting damage, oxygen dependence and ultimately death.  Sarcoidosis can affect any organ in the body including the skin, liver, lymph glands, spleen, eyes, nervous system, brain, muscles, bones, heart, GI tract and kidneys. Tests to determine sarcoidosis include examinations to assess organ damage and biopsies to confirm the presence of granulomas.  

When the lungs are affected the heart must expand to handle the oxygen requirements of the body.  The person experiences shortness of breath and over a period of time may notice their rib cage expanding.  In women this is noticed by an expanding bra band size without bra cup expansion.  You go from a size 34 B to a size 36 B.  In men, you go from a large to an extra large shirt.  The expanded heart size can be seen on a simple chest x-ray.  To see granulomas in the lungs clearly, a spiral CT scan of the chest is needed.  Non-specific blood tests such as a Serum Angiotensin Converting Enzyme also known as ACE or SACE test can help to monitor the condition. Other blood tests are ordered to evaluate and rule out other conditions.  ACE levels will be elevated in 50% to 80% of those with active sarcoidosis. Concentrations of ACE tend to rise and fall with disease activity.

Granulomas also occur on the skin as reddish purple lumps.  While unsightly, the skin granulomas are not as problematic as the internal granulomas.  When granulomas from sarcoidosis impact organs they lessen the ability of the organ to function properly.  Fatigue, dizziness, muscle pain, bone pain, elevations in blood pressure, problems with kidney functioning, vision problems, inflammatory bowel disease and other problems can all be complications of active sarcoidosis.

There are few treatments available.  The most common treatment is aimed at surpressing the immune system with corticosteroids. They function by suppressing the pro-inflammatory cytokines and chemokines that are involved in cell-mediated immune responses and granuloma formation. Only in a select group of patients is it justifiable to use these drugs, after careful evaluation of the pros and cons. Importantly, disease severity, e.g. threatened organ functions, and not disease activity itself should be the deciding factor in this process.  These drugs impact the immune system and to supress it leaves the patient open to infection at much higher than normal rates, increasing the risk of death by infection.  As newer immune supression drugs enter the market more clinical trials are taking place.

The National Institute of Health runs several clinical trials of different treatment protocols for sarcoidosis each year.  These vary by city and types of treatment being investigated.

In addition there is an atypical online clinical trial by Trevor Marshall, PhD, a researcher, called the Marshall Protocol.  The Marshall Protocol has a different etiology of sarcoidosis and treatment than traditional medicine does.  The theory links several unusual autoimmune diseases together.   These include chronic fatigue syndrome, chronic lyme disease, and others, as well as sarcoidosis.  The treatment protocol involves rotating courses of antibiotics combined with an atypical blood pressure medication, dietary changes and avoidance of vitamin D in sunlight and other sources.  The treatment needs to be supervised by a medical professional.  Research papers are presented on the website and there are support groups for people going through the clinical trial.  The level of complexity of the protocol is high and a background in medicine or microbiology is helpful to adequately understand the research being presented.  Dr. Marshall presents an interesting theory of immune functioning, backed by research data.  Many people on the protocol report it is helping them and document blood test results to back up their reports.

Because sarcoidosis is marked by relapses and remissions, and has little understanding about how it works, there is a lot of misinformation about the disease.  Death from sarcoidosis is death from organ failure or other disease complications.  So it's not often listed as a cause on a death certificate.  Because of heart, lung and kidney involvement, death from heart attack and stroke are common.  The disease runs in families raising a genetic predisposition component.

The traditional Foundation for Sarcoidosis Research to donate to, has the slogan "Kick in to Stop Sarcoidosis" of "KISS."  You can donate to them at:

Foundation for Sarcoidosis Research, 122 South Michigan Avenue, Suite 1700, Chicago, IL 60603To donate by phone or mail, please call 866.358.5477 or mail your check (payable to Foundation for Sarcoidosis Research). 

The Marshall Protocol is supported by the Autoimmunity Research Foundation.

You can donate to them at:

Autoimmunity  Research Foundation, 3423 Hill Canyon Avenue, Thousand Oaks, CA 91360.