"Relatively rare," "complex," and "enigmatic" are just a few of the terms used to describe sarcoidosis (SAR-COY-DOE-SIS), and you may ask, what is it?
"Sarcoidosis is an inflammatory disease of unknown etiology," explained Gail A. Hayes, sarcoidosis clinical navigator at Walter Reed National Military Medical Center (WRNMMC).
To raise awareness about sarcoidosis, Congress first declared April as Sarcoidosis Awareness Month in 2008.
"It can affect any organ, [and] some research suggests that viruses, bacteria or chemicals can trigger the disease. These triggers are usually harmless in most people, yet it may cause the immune system to develop inflammation in patients with the right genetic disposition." Currently, there is no known cure for the disease.
Hayes added that because people with sarcoidosis have compromised immune systems, they are susceptible to other illnesses.
Hayes explained the aim of the observance is not only to raise awareness about sarcoidosis, but to also encourage further research into the disease. She said sarcoidosis occurs in about 10 to 20 people per 100,000 and is more common among people of African descent than Caucasians. "Sarcoidosis usually affects adults between the ages of 20 and 40, and it is more common for women to get [it] than men," she added.
A number of celebrities have suffered, some fatally from this disease.
Because sarcoidosis most commonly affects the lungs, eyes and skin, the search for environmental causes has centered on exposure to airborne antigens, such as emissions from wood-burning stoves, tree pollen, insecticides and moldy environments, according to an article written by Drs. Michael C. Iannuzzi, Benjamin A. Rybicki and Alvin S. Teirstein published in "The New England Journal of Medicine" in November 2007. They added the search for causes has also looked at occupational factors associated with coalmining, metalworking, firefighting and handling of certain building supplies.
Channie Bell, a WRNMMC beneficiary who was first diagnosed with sarcoidosis in 1980, said she feels genetics was instrumental in her developing sarcoidosis. She is the youngest daughter of three, and both of her sisters have the disease as well. Bell found out she had sarcoidosis while still in the Army stationed at Fort Riley, Kan. She explained a "real bad pain" in one of her eyes forced her to go to the emergency room one night.
"I went to the emergency room because I couldn't get my eye open," Bell said. "They kept me at the hospital and the following morning, an ophthalmologist came in and determined a biopsy was needed. The next day, he told me he thought I had a lung disease." She was then aerovaced to the former Fitzsimons Army Medical Center in Colorado, where a lung biopsy was done, which revealed her sarcoidosis.
"Believe it or not, I really felt no sickness prior to this," said Bell, who at the time was in her early 20s. She remained in the hospital four months after her diagnosis for treatment.
Hayes explained steroids are the first line of treatment for sarcoidosis, and this was the case for Bell, who, four years after being diagnosed, began developing other challenges from the disease and medication. Hayes said chronic patients with sarcoidosis may deal with symptoms that increase and decrease in intensity over many years.
A native of Washington, D.C., Bell said in 1985 she was discharged from the Army because her sarcoidosis made it difficult for her to meet certain military requirements. She returned to D.C., and was treated for her disease at the Veterans Affairs hospital and the former Walter Reed Army Medical Center.
Bell said although she doesn't have asthma, her sarcoidosis made it difficult for her to breath in the D.C. region, so she moved to Florida in the late 1980s. She recently returned back to the area to care for her mother. She said she has a hard time finding doctors who understand her disease.
"It's not a disease very prevalent among other races," said Bell, who is African American, stating people of European heritage, especially those of Scandinavian ancestry, as well as Hispanics, also have sarcoidosis in higher numbers than do Caucasians. She added that another concern with sarcoidosis is it is often misdiagnosed, which was the case with one of Bell's sister, who did not receive care in the military health care system.
"My sister almost died because [doctors] were treating her for everything under the sun and I told my mom to ask them to see if they checked her for sarcoidosis," Bell explained. "They tested her for it and found she has it." She added the symptoms of sarcoidosis are similar to those of cancer, for which it is often diagnosed and what doctors had initially thought her sisters had developed.
"All three of us are in that percentage of people in which doctors say only about 4 percent of the people diagnosed with sarcoidosis have it chronically," Bell continued. She added she tries to eat right, exercise and keep her weight down to decrease the challenges of sarcoidosis. "I try to stay on top of it."
She said her sister has not been as diligent, and the sarcoidosis has affected her brain.
"People need to be educated about the signs and symptoms for sarcoidosis, because they may be so mild. Left untreated, sarcoidosis can really cause a lot of problems," Bell added.
For more information about sarcoidosis, call Gail Hayes in the Pulmonary Clinic at (301) 295-7786.