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Published on November 09, 2015

“The most common disease you’ve never heard of”“The most common disease you’ve never heard of”

The odds are pretty good that until the past week you’d never heard of Lewy body dementia, even though it afflicts more than 1.3 million Americans.

“It’s the most common disease you’ve never heard of,” neuroscientist James E. Galvin, told US News and World Report.

Lewy body dementia was in the national spotlight when the widow of Robin Williams told People magazine and ABC News that a coroner’s report showed the beloved comedian had the neurological disease.

Lewy body dementia (LBD), also known as Lewy body disease, is the second-most-common degenerative disease after Alzheimer’s disease, but it is often misdiagnosed as Alzheimer’s or Parkinson’s because it mimics some of the symptoms of those better-known diseases. People with LBD have fluctuations in their attention and alertness, motor difficulties and frequent hallucinations.

A new test can help doctors diagnose LBD more easily and accurately.

Dr. Galvin, associate dean for clinical research at Florida Atlantic University’s Charles E. Schmidt College of Medicine, developed the Lewy Body Composite Risk Score. Using the new test, clinicians can diagnose LBD in about three minutes.

“The (risk score) was able to discriminate between Alzheimer’s disease and LBD with 96.8 percent accuracy,” according to a press release issued by the university.

“Most patients never receive an evaluation by a neurologist skilled in the diagnosis of Lewy body dementia, and significant delays and misdiagnoses occur in most patients with this disease,” Dr. Galvin said in the press release. “This new tool has the potential to provide a clearer, more accurate picture for those patients who are unable to be seen by specialists, hastening the correct diagnosis and reducing the strain and burden placed on patients and caregivers.”

Dr. James A McCarthy, MD, a neurologist based at the Neurology Center of Cape Cod, agreed that the new test was a helpful addition to the diagnostic toolkit.

“This codifies the symptoms and makes it easier to diagnose Lewy body disease,” Dr. McCarthy told OneCape Health News.

“A lot of people haven’t been aware of Lewy body disease,” he said. Some symptoms are the same as Alzheimer’s. If you’re going to guess Alzheimer’s, you’ll be right 70 percent of the time.”

But there are differences between the two, he said. “Hallucinations are rare with Alzheimer’s until the end and stiffness is rare until the end. Lewy body starts with these symptoms.”

People with LBD also tend to have some of the symptoms of Parkinson’s (stiffness, resting tremors, slow movement and balance issues), which sometimes masks LBD.

The new LBCRS test uses 10 questions to detect which symptoms have recurred over a six-month period. Questions include asking whether the patient has:

  • slowness in initiating and maintaining movement
  • rigidity of motion in any of the four extremities
  • frequent staring spells
  • visual hallucinations.

The abnormal protein deposits (also known as inclusions) that cause LBD were discovered by neurologist Frederic Lewy in 1912.

“The Lewy bodies are packets of protein that shouldn’t be there,” said Dr. McCarthy. “If they stay in the brainstem, you get Parkinson’s. If they spread to the cortex, you get Lewy body disease.”

There is no cure for LBD, but treatment can offer palliative relief for symptoms. By providing earlier diagnosis, the new LBCRS test can prevent patients from being treated with medications that are aimed at Alzheimer’s or Parkinson’s patients but inappropriate or harmful for those with Lewy body disease.

“With LB detection, you know what treatments to avoid,” said Dr. McCarthy.

The new test has long-term ramifications for research on future treatments. “Early detection of Lewy body dementias will be important to enable future interventions at the earliest stages when they are likely to be most effective,” said Galvin.

Robin Williams was not the only well-known person to have had LBD. Others include famed DJ Casey Kasem, actress Estelle Getty of “The Golden Girls” and Don Featherstone, who created the lawn flamingo.

Williams, the star of “Mork & Mindy,” “Good Will Hunting” and “Dead Poets Society,” struggled with depression and killed himself in 2014.

Robin Williams’ widow, Susan Schneider Williams, told People magazine, “I pray to God that (his case) will shed some light on Lewy body for the millions of people and their loved ones who are suffering with it.”