Thousands Have Sarcoidosis and Don't Know It

Sarcoidosis (sar"koi-do'sis) is a mysterious disease that effects thousands in the United States, yet is not well known.

It is mainly those of African Americans and Northern European decent that get sick with Sarcoidosis. Though people of Asian and Puerto Rican heritage are known to have sarcoidosis as well. Usually sarcoidosis first strikes in adults under 40 years of age.

The symptoms can range from mild to debilitating to deadly.

Scientists aren't sure of the cause, but sarcoidosis is believed to be caused by an auto immune malfunction. No gene has been pinpointed to be the cause of Sarcoidosis.

According to the US Department of Health and Human Services National Institutes of Health, Sarcoidosis causes inflammation, that in turn produces lumps of cells in various organs in the body. These lumps are called "granulomas" ((gran"u-lo'mahs), because they resemble grains of sand.

There are sub groups that have proven more likely to get sarcoidosis, including elementary and secondary school teachers, firefighters, those who work around agricultural dust and pesticides and, oddly, nonsmokers.

In our family it was my mother, of Irish and Scottish decent, who battled Sarcoidosis. Slightly more females get sarcoidosis than males. She initially presented with the symptoms of coughing, shortness of breath, weight loss and painful lymph nodes. A smoker, we were convinced that she had lung cancer.

Though relieved when the diagnosis was finally announced as negative for lung cancer, we were faced with a strange disease nobody had ever heard of, and, at that time, 1977, was not well known in even in the medical community.

Sarcoidosis in 2007 is still an orphan disease, well outside the main stream of well publicized illnesses.

Many people are believed to have sarcoidosis to some degree, so it is worth noting the symptoms and treatments.

Symptoms:

In the lung: a shortness of breath, dry cough, wheezing and a pain in the chest that gets worse with a cough.

Lymph Nodes: painful and enlarged in the neck and chest and arm pits. Sometimes in the groin.

On the skin: discolored skin, bumps and ulcers. Some appearing on the face and some on the ankles and shins. Skin sores in the nose, cheeks, ears, eyelids and fingers can appear as well.

Eyes: red eye, burning, itching, sensitivity to light, spots in front of the eyes, blurry and discolored vision. Rarely there can be blindness.

Heart: shortness of breath, legs swelling, wheezing and coughing, irregular heartbeats, sudden death.

Joint and Muscle Symptoms: stiffness and pain, muscle aches

Bone symptoms: holes in the bones, swelling of the fingers, both usually painless.

Liver problems: fatigue, fever, itching, pain under the right ribs.

In addition, there are symptoms that effect the blood, urinary and kidneys and the nervous system.

In a study in the late 1990's, it showed that nearly 95 percent of those diagnosed with sarcoidosis had contracted it in the lungs. This is where my mother's disease was most aggressive.

Diagnosis:

There is no test that can plainly identify sarcoidosis. Your doctor will take your health history and look for obvious symptoms, but because so many of the symptoms can resemble others, chest x rays, CT scans and MRI scans, blood tests, electrocardiogram (EKG), blood gas tests and a bronchoscopy will be used to finally determine sarcoidosis.

Treatment:

The main treatment for sarcoidosis is a cortisone treatment, using prednisone. This will help to relieve the inflammation and shrink the granulomas.

Low doses of cortisone are used to minimize the side effects. In 1977 there was no agreement as to what was too much or too little to fight the sarcoidosis symptoms, so my mother was given too large amounts, which resulted in severe side effects, such as weight gain, high blood pressure, mood swings, acne, sleep disturbance, osteoporosis glaucoma and diabetes.

Not all of these side effects presented after treatment with prednisone, but appeared as she aged.

Eventually, my mother's sarcoidosis went into a remission, only to reappear about fifteen years later, and more severe.

Living with Sarcoidosis:

There is no way to prevent sarcoidosis, as it has no known exact cause. In some cases it has shown to be hereditary, but that is not common. Once you have been diagnosed with sarcoidosis it is recommended that you don't smoke, stay away from dust and chemicals that can do lung damage, eat healthy, and avoid too much physical strain.

Because sarcoidosis does not strike many people as a percentage of the population is falls into the orphan disease category, where not much funding is available and not much study done.

Some famous people with sarcoidosis include basketball legend Bill Russell, actress Karen Duffy, former MTV VJ Julie Brown and Bernie Mac.

For most, sarcoidosis is not a terminal disease. If it ravages the heart or lungs it can be, but that occurs with only about 5 percent of the population.

My mother's lungs were scarred due to the disease, and this led to her being on oxygen and becoming an invalid. Eventually her lungs gave out and she died in 1997.

The following sources were used to contribute to this article:

Department of Health & Human Services, National Institutes of Health:
http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html

The American Lung Association:
http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=35766

Foundation for Sarcoidosis Research:
http://www.stopsarcoidosis.org/sarcoidosis/diseasefacts.htm?gclid=COji5Z3SnpACFThhIgodHTV-rQ