Understanding Sarcoidosis

Sarcoidosis is a disease which, despite many years of research, still has no known specific cause. Sarcoidosis is not a cancer and is not a contagious disease – in some cases it seems to run in families. Medical textbooks twenty years ago listed the disease as being primarily one of African American women and patients of Scandinavian descent. We now know that, although Sarcoid seems to be more prevalent in these populations, and there may be a genetic predisposition in these populations, the disease is by no means limited to these groups. More and more Caucasian men and women (of eastern European and Scandinavian descent), Puerto Rican patients, and African American men are being diagnosed.

Sarcoidosis is not a death sentence! In fact, once diagnosed, your doctor’s first question will be to determine how extensive the disease is, and whether or not to treat at all – in many cases the choice will be to do nothing but watch carefully and allow the disease to go into remission on its own. It is also not uncommon to have a patient present to a doctor with evidence of disease in the past which was not previously recognized – in those cases where the disease can be shown to be in remission, no treatment may be suggested. 60-70% of newly diagnosed cases will go into remission with or without treatment – evidence of the disease such as nodules or scarring on a chest CT scan may remain forever – but symptoms and disease activity will not recur. 20-30% of patients may experience disease recurrence of varying severity or continued disease without periods of remission despite treatment. Unfortunately there is no way to predict which patients will remit and which will go on to have long term difficulty – however, the bottom line is that most patients with sarcoidosis will go on to lead a full, healthy and productive life.

What is Sarcoidosis?

Following exposure to some still unidentified trigger, a patient’s immune system is “turned on” in a way that creates a particular pattern of inflammation. The inflammation can affect any organ in the body, but the lungs and skin are the most common. If the inflammation is allowed to continue, the end result will be scarring of the tissue. The goal of treatment is to interrupt the inflammation so that a damaging scar does not form. Scar formation is more important in certain organs – such as the lungs, eyes, heart and brain/brain coverings/nerves – disease involving these organs would be treated with anti-inflammatory medications. Joint and muscle discomfort would also be addressed with anti-inflammatory medications. Skin involvement is more unsightly than dangerous but also can be treated – many times, very effectively by injecting medication directly into the skin lesion. Some sarcoid patients may have difficulty with calcium metabolism which, for the most part, can be managed with diet changes.

What triggers that cause the immune system to "turn on"?

Despite many years of research, including a recent, large, multicenter attempt to find commonality in the exposure histories of sarcoid patients, no single material has been identified. It seems clear that the offending agent is inhaled by sarcoid patients as opposed to entering the body by mouth or by contacting the skin. Molds, certain chemicals, and inert particulates have all been implicated. There seems to be a disproportionate number of cases in healthcare workers, fire fighters and aircraft servicemen, but this may be a consequence of more frequent health screening in these groups. Interestingly, there has been an unusual increase in the number of cases diagnosed in New Yorkers following the 911 disaster – the affected patients cut across all demographic groups.

How would I know if I have sarcoidosis?

Patients present differently – shortness of breath with activity, cough without sputum production, and wheezing are some of the most common symptoms. Swelling and pain in the ankles, wrists, and knees is also fairly common. A skin rash may be seen most commonly on the legs, scalp, or face – but any body part can be involved. The “rash” is a raised/lumpy area that does not itch nor does it come and go quickly the way a viral rash would. Sometimes patients experience profound fatigue, unexplained weight loss, daily fevers and excessive sweating especially at night. Patients with any or all of these symptoms should consult with their doctor.

What do I do if I am diagnosed with sarcoidosis?

The decision to treat or not to treat sarcoidosis at a given time is critical. The chance of multiple organ involvement must be considered. Therefore, it would be wise to seek out a doctor/healthcare system with a special interest in sarcoidosis and the ability to approach the disease from a multi-disciplinary perspective – involving the appropriate expert specialists when needed – providing the long-term follow-up to monitor remission status, disease recurrence, and response to treatment.

April is National Sarcoidosis Awareness Month

In 2008, Congress declared April as National Sarcoidosis Awareness Month to bring more attention to this rare, multisystem disease. Four years later, we are slowly but surely making progress, both in public awareness and in research.


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