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Morgellons: What you should know about this mystery disease

Meagan Morris is an entertainment and lifestyle journalist living in New York City. In addition to SheKnows, Morris contributes to many publications including The New York Times, Yahoo! News, PopEater, NBC New York and Spinner. Follow he...

Joni Mitchell helps shed light on a controversial health condition

Singer Joni Mitchell was hospitalized earlier this week after she was found unconscious in her Los Angeles-area home.

The "Big Yellow Taxi" singer has kept a low profile over the past few years because of several health problems, including one horrific-sounding ailment: Morgellons disease.

What exactly is Morgellons?

"Morgellons syndrome is a chronic skin condition in which the patient believes their skin to be infested with some sort of microorganism or entity," says Amesh A. Adalja, M.D., a board-certified infectious disease specialist at the University of Pittsburgh Medical Center. "They will often produce 'fibers' and other similar objects that they believe emanated from their skin."

Along with the fibers, sufferers also complain of stinging and tingling sensations, fatigue and problems with memory and concentration. Most also complain of intense pain.

A 2012 study from the Centers for Disease Control found that most of those who suffer from Morgellons are white females with a median age of 52.

Why it's so mysterious

Despite that, finding stories of patient experience with Morgellons on the internet is difficult, save for a Reddit page and a few others.

"It's painful... right now I have horrible painful sores, I have a sore on my finger that looks like I was burned with a cigarette," one user wrote on Experience Project. "My face is a mess and I just want this to go away. I can't talk to people about it. and I don't want to be labeled as crazy or diseased."

Why would patients be labeled as crazy? It's simple.

Many doctors don't believe in it

Doctors can't come to a conclusion on whether or not it's a real illness and instead explain it as "unexplained dermopathy" or delusional infestation, a mental condition rooted in the belief that one's skin is infested with bugs or parasites.

"The condition can cause significant impairment in the patient's daily life," adds Dr. Adalja. "However, with closer scrutiny, these patients have no evidence of infection, and the 'fibers' are of environmental origin [e.g. clothing]. This condition is very similar to delusional infestation."

In the CDC study, researchers studied 115 Morgellons patients and found that the fibers associated with the condition were "likely of cotton origin," and "no parasites or mycobacteria were detected."

"No common underlying medical condition or infectious source was identified, similar to more commonly recognized conditions such as delusional infestation," the authors of the study concluded.

How to treat Morgellons

Despite the controversy in the medical field, many doctors agree on one thing: Those who complain of Morgellons are suffering, and they need treatment.

"It's really important to discuss that there might be other ways to approach the disease," Jason Reichenberg, director of dermatology at the University of Texas Southwestern-Austin, told USA Today.

Many times patients are advised to undergo psychological evaluation for depression or anxiety to deal with their symptoms, but that does little to alleviate pain. Other patients have reported some success with antibiotics and alternative treatments, but only after finding doctors who took their complaints seriously.

"Until we can find an exact cause or a cure, it's important that we try to improve their suffering," added Reichenberg.

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