My name is Nancy and I work at Delta County Memorial Hospital. I was asked to share my story as it is National Sarcoidosis Awareness Month in April.
I personally have chronic sarcoidosis (of the lung). I have been suffering from this disease for about 25 years. For the first five years I was extremely sick without a clear diagnosis. At one point it became pretty serious and debilitating for me. It wasn't until I had a partial lung removed that a definitive diagnosis was finally made. Needless to say, we need more funding and research to help unravel this mysterious disease, in hopes that a cure will soon be found. I am here to help do my part in bringing public awareness and education to this disease as so many are suffering.
Here are some facts about this little known disease:
Sarcoidosis is an inflammatory disease characterized by the development and growth of tiny lumps of cells called granulomas. These granulomas most closely resemble sugar or sand in appearance. If these tiny granulomas grow and clump together in an organ, they can affect how the organ works, leading to the symptoms of sarcoidosis. The granulomas can be found in almost any part of the body, but occur more commonly in the lungs, lymph nodes, eyes, skin and liver.
A normal immune system would defend one's body against anything seen as foreign or harmful. Specific cells would be sent out to protect the organ by releasing chemicals that would produce inflammation. By surrounding the evading substance or substances the foreign invader would then be isolated and destroyed. In a person with sarcoidosis, for whatever the reason, the inflammation remains and this allows granulomas to form.
Although no one is sure what causes sarcoidosis, it is thought by most scientists to be a disorder of the immune system. The course of the disease varies from person to person. It is known to affect people of all ages, races and gender worldwide. Some people appear to have a genetic predisposition to developing the disease, which may be triggered by exposure to specific bacteria, viruses, dust or chemicals. Researchers are still trying to pinpoint the genes and trigger substances associated with sarcoidosis. This is an autoimmune disease and is NOT contagious.
To make a diagnosis of sarcoidosis in a patient, the physician must first exclude other known diseases that may be similar in appearance to sarcoidosis. For example, infections like tuberculosis, and certain cancers, such as lymphomas, can mimic many of the signs and symptoms of sarcoidosis. It is very important for a physician to thoroughly investigate a patient before giving the diagnosis of sarcoidosis because other types of diseases might require much different treatments.
It often goes away on its own, but in some people symptoms of sarcoidosis may last a lifetime. For those who need treatment, anti-inflammatory medications can help.
No two persons with the disease are alike; therefore we could be compared to a snowflake. In fact most people with the disease look perfectly healthy from the outside.
Where in the Body
Is Sarcoidosis Found?
As much as 90 percent of sarcoidosis is initially found in the lungs. However, sarcoidosis can also occur in any other organs of the body at the same time or later in the disease course. Other commonly affected sites include the lymph nodes, skin and eyes.
There may be no symptoms. When symptoms occur, they can involve almost any body part or organ system in your body.
Lung or chest symptoms include chest pain (most often behind your breast bone); dry cough; or shortness of breath.
Symptoms of general discomfort or uneasiness may include fatigue (one of the most common symptoms in children); fever; joint achiness or pain (arthralgia); overall feeling of discomfort, illness, or lack of well-being; weight loss (one of the most common symptoms in children).
Skin symptoms include hair loss; raised, red, firm skin sores, almost always on the front part of the lower legs; rash; scars that become raised or inflamed.
Nervous system symptoms may include headache; seizures; weakness on one side of the face.
Eye symptoms include burning; discharge from the eye; dry eyes; itching; pain; vision loss.
Other symptoms may include dry mouth; fainting spells if the heart is involved; nosebleed; swelling in the upper part of the abdomen.
What is the Typical
Course of Sarcoidosis?
In most cases of sarcoidosis with little or no symptoms, the disease disappears of its own accord, and no treatment is necessary.
If the lung sarcoidosis is severe, or if the disease spreads to the skin or other organs, then there is a greater chance that the sarcoidosis will become chronic and resistant to treatment.
The most serious outcome of chronic sarcoidosis is the development of pulmonary fibrosis, where the lung tissues become scarred and weakened. The end result is poorly functioning lungs, shortness of breath and severe disability.