Coping with an ‘invisible disease,’ and turning to peers for support

In the medical world, inflammation causes a litany of health issues. Ranging from arthritis to bowel disease, from skin disease to cancer. It occurs as a result of a change in our immune system.

What is sarcoidosis

Sarcoidosis is such an illness that results from inflammation. A rather common condition, sarcoidosis is an immune disease that causes abnormal inflammation of cells in the body. Sarcoidosis can affect the lungs, eyes, and other organs – including the heart and brain in the most severe cases.

Dr. Daniel Culver, a leader in the treatment of sarcoidosis and a staff physician for the Respiratory Institute at Cleveland Clinic, empathizes with his patients.

“People look at them and say, ‘you don’t look sick’, but the truth is, these patients are very ill,” Dr. Culver says. “It’s difficult to cope with something that many people don’t understand.”

What’s more, the disease is not fully understood by researchers, and extremely difficult to diagnose. The cause of the disease is unknown, but studies have shown that it is more common among African Americans and females, and often occurs before the age of forty.

Sarcoidosis is often overlooked

On average, people with sarcoidosis in their lungs will pay five visits to the doctor before being properly diagnosed. Almost all patients have lung, or chest symptoms including chest pain, dry cough, and shortness of breath.

“Sarcoidosis is often overlooked because it manifests in a number of different ways, and presents itself with a number of different symptoms depending on the inflamed area of the body,” says Dr. Culver. “Physicians assume bronchitis or asthma when they hear wheezing, or worse, cancer, when they see enlarged lymph nodes in the lungs.”

How sarcoidosis can be diagnosed

Diagnosis usually requires an X-ray or CAT scan followed by a biopsy, and the biopsy doesn’t prove the existence of the disease until other conditions are excluded.

With all of the complexity involved, patients are often left with questions on how to cope.

At this point, there is no cure for sarcoidosis, but one-half to two-thirds of patients with sarcoidosis will have the disease go away on its own over time, says Dr. Culver.

Treatment is available

“Symptoms are able to be suppressed in most cases,” says Dr. Culver. “By offering different treatment options, patients can go on living a more comfortable life, with fewer symptoms. Sarcoidosis can be something you have in the background, not something that defines your life, for most people.”

Steroid treatments as well as newer medications like methotrexate, leflunomide, infliximab and others – have been shown to be effective in reversing the symptoms of the disease.

Dr. Culver is positive about the outlook for curing the disease. “Research continues, and our sarcoidosis community is dedicated to exploring new medications to combat inflammatory immune diseases,” he says.

Online forums and conferences

Sarcoidosis sufferers often find solace in ‘talking’ to one another in online forums to legitimize their disease.

“These patients have a real sense of community,” Dr. Culver says. “No one understands their suffering better than they do – and it’s important for them to know they’re not alone.”

Patients with sarcoidosis had a rare opportunity to meet one another in person after connecting online at this year’s World Association of Sarcoidosis and Other Granulomatous Disorders North American Conference, Oct. 4-6, 2012.

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