The word "sarcoidosis" derives from the Greek words "sarko" and "oid" which means "flesh-like." So, instead of calling it the flesh-like disease, it was named SARCOIDOSIS (pronounced SAR-COY-DO-SIS).

The first description of sarcoidosis (as skin lesions) was reported in 1878 by dermatologists, Jonathan Hutchinson, M.D. and Caesar Boeck, M.D. From 1899-1938, sarcoidosis was reported to affect various systems in the body classifying it as a multi-system disorder.

To date, there is no known evidence that sarcoidosis is contagious. Medical researchers speculate several causes for this disease:
1) a viral or bacterial infection;
2) a defect in the body's immune system;
3) exposure to a toxic substance;
4) an unknown environmental cause; and
5) an inherited or genetic cause.

The most common manifestations of sarcoidosis are found in the lungs, skin, joints, eyes, central nervous system, heart, liver, kidneys, lymph glands, and other soft tissue organs. To the medical community, it is known as the “great masquerader” because it mimics other diseases and conditions making it difficult for doctors to diagnose and treat. Definite diagnosis is further hindered because it can dwell in the body in an asymptomatic state (no symptoms).

It is further characterized as persistent inflammation in the form of lymphocytes (a type of overactive blood cell) which causes the formation of what is called “granulomas.” The granulomas appear as lumps or nodules (singular or as clusters) in the body ranging in size from a pea to a fist. As sarcoidosis maneuvers throughout the body, the inflammed granulomas create scar tissue and block the function of vital organs which can cause permanent organ and tissue damage at the rate of 20 to 30 percent of all diagnosed cases.

Common Symptoms & Diagnosis

Sarcoidosis can present itself as shortness of breath, a dry cough irritating lingering cough, chest and back pain, weight loss, malaise, chronic fatigue, listlessness, fever, skin rashes, red bumps on the legs, arms, and shins, stiffness of the joints, swelling and arthritis of the ankles, wrists, hands and feet. Symptoms can sometimes appear and disappear spontaneously or remain active for a life time.

Sarcoidosis has been linked as a contributing factor to diabetes, blindness, hypertension, heart attacks and many other disabling conditions or side effects. Sarcoidosis is often diagnosed by accident during a routine physical examination. Diagnosis can also be determined by a chest x-ray, Gallium scan, Kveim test, slit lamp examination, biopsy, Cat-Scan, thorough blood work-up or Pulmonary Function Test (PFT). Patients are often mis-diagnosed with other illnesses like Lupus, Multiple Sclerosis, Hodgkins Lymphoma, Breast Cancer and AIDs.

Sarcoidosis manifests in the lungs 90% of the time and is often described solely as a lung disease. Irreversible lung damage occurs in 20% of cases. There are four stages of pulmonary sarcoidosis ranging from mild to advanced. Progression of pulmonary sarcoidosis is measured by the degree of lung involvement which may not affect the body in consecutive order.

Who Gets Sarcoidosis?

Sarcoidosis affects all races and age groups primarily targeting young adults between the ages of 20 and 40. In 1994, the National Institutes of Health, National Heart, Lung and Blood Institute reported that in the United States 5 in every 100,000 white people had the disease, but for African Americans the ratio was 40 in every 100,000 people. For reasons unknown, there is no explanation why there is a higher occurrence in the African American community. African American women contract the disease at twice the rate of African American men and have more chronic and debilitating cases. The death rate for African Americans is 15-17 times higher than Whites. For 18% of African Americans diagnosed, 12% have a family member (mother, father, sister, brother) with the disease. It is estimated that over one million people have sarcoidosis in the United States. Sarcoidosis is known to be fatal for 5-10% of diagnosed cases.

How Is It Treated?

Aggressive treatment using corteosteroids and anti-inflammatory drugs to reduce inflammation and control symptoms is preferred. Drugs such as prednisone, chloroquine, and methotrexate are used to control symptoms but are not a cure. Patients may experience many side effects requiring careful monitoring by a physician. But, even with treatment, sarcoidosis can escalate to a chronic state, burn out or go into remission. Some patients require intense aggressive treatment while others required little or no treatment and are able to live fulfilled lives.

Advocacy and Awareness

The mystery of sarcoidosis is very compelling and its impact in the United States has yet to be realized. Sarcoidosis is a serious health issue and is as important as any of the diseases (AIDs, breast cancer, prostate cancer, diabetes, multiple sclerosis, hypertension, Parkinsons) that are affecting our society today. Many people are dying from this disease. We need your help, and appeal to you to give sarcoidosis awareness paramount status on your advocacy and fund raising agenda.

Sarcoidosis has established itself as a major health concern. If, we do not address the need for sarcoidosis awareness and cure research, this mysterious plague will continue to infiltrate our human community as a silent killer.

Sarcoidosis demands our attention before it reaches epidemic proportions and too many human lives have been sacrificed.