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National Poll Shows Delayed Diagnosis, Inadequate Pain Care, And Distressing Life Changes Plague Millions With Neuropathy 

New York, NY, May 14, 2012—A new national Neuropathy Association poll of peripheral neuropathy patients finds that the majority of respondents experience an extended period of time from symptom onset to diagnosis of their neurological disease, with 57% taking two or more years to receive an accurate diagnosis.  In addition to facing delays in receiving a diagnosis that might help prevent disease progression and provide early access to appropriate care and treatment, close to 50% of these patients have been told their neuropathy is “idiopathic” (of an unknown cause).  A large majority--70%--of patients experience chronic neuropathic (nerve) pain for which they use multiple therapies, and nearly half say they are challenged in coping with neuropathy’s impact on their overall well-being and quality of life.

“With the potential for millions of Americans to suffer from neuropathy’s progressive chronic pain and disability, the U.S. is currently unprepared to face a major public health crisis if healthcare providers, the media, and public policy officials continue to ignore the inadequacy of medical resources and research funding for neuropathy,” observes Tina Tockarshewsky, president and CEO of The Neuropathy Association. 

For 17 years, The Neuropathy Association has been an active national patient advocacy organization working to change perceptions about this progressive, chronic neurological disease.  May 14-18 is the eighth annual Neuropathy Awareness Week, an event launched by the Association to raise awareness about neuropathy. 

Peripheral neuropathy, or “nerve damage,” impacts over 20 million Americans, making it one of the most common chronic diseases and a leading cause of adult disability in the U.S.  Neuropathy results from injury to the peripheral nerves, disrupting the body’s ability to communicate with its muscles, organs, and tissues.  With early diagnosis, neuropathy can often be controlled and quality of life restored.  If ignored, symptoms can intensify to loss of sensation, weakness, unremitting pain, and/or disability.

The Neuropathy Association’s national survey of 1,922 patients asked about the length of time between symptoms and confirmed neuropathy diagnosis, revealing 57% took two or more years and 43% took less than two years to diagnose:

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“While early intervention and treatment can be critical to slowing the disease’s progression, our biggest challenge is many Americans still do not know about neuropathy, are unaware they have it, and do not recognize warning signs.” notes Dr. Thomas H. Brannagan, III, medical advisor for The Neuropathy Association.  “Too often neuropathy is discovered only after irreversible nerve damage has occurred.”

The survey asked respondents to identify their specific neuropathy diagnosis.  While there are over 100 known types of neuropathy, 49% of the patients say their neuropathy is “idiopathic” (an unknown cause).  At 15%, prediabetic/diabetic neuropathy was the second most common type.  Other neuropathy types included autoimmune-related, hereditary, cancer or chemotherapy-related, entrapment or trauma-related, and neuropathies related to sources such as toxin-induced, nutritional deficiencies, gastro-intestinal disorders, metabolic diseases, or infectious diseases (including Lyme and HIV/AIDS):

Q1 Graph
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“Neuropathy is often misrepresented as only being diabetes-related.  We know that diabetic neuropathy typically represents a third of the neuropathy patient community; yet, close to half of the patients receive a diagnosis of idiopathic neuropathy.  This survey supports the fact that confirming a diagnosis, when possible, requires physicians and patients in partnership for a thorough evaluation to identify the possible source of the nerve damage,” says Brannagan.

The survey asked patients if they were using more than one therapy for neuropathy and neuropathic pain management, revealing: 

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“Our community is gravely underserved with treatments to bring relief, and the available treatments are not always a perfect fit, leaving patients to try a variety of approaches to find help,” emphasizes Tockarshewsky.  “We have only 7 FDA indicated treatments: 1 for CIDP, the remainder are for diabetic neuropathic pain and post-herpetic neuralgia; this addresses only about a third of our patients--which begs the question:  what are the other two thirds (or 12 million) Americans supposed to do for their suffering?”

In addition, the survey asked patients about their coping challenges with their neuropathy and neuropathic pain.  Multiple issues were identified, with the greatest burden falling almost equally weighted on maintaining overall well-being and daily interactions:

Q4 Graph
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About Peripheral Neuropathy
Peripheral neuropathy, or “nerve damage,” affects over 20 million (or 1 in 15) Americans, making neuropathy one of the most common chronic diseases and one of the leading causes of adult disability.  Early warning signs can include pain, numbness, tingling, weakness, and pain. People experiencing symptoms should consult a neurologist.  With early diagnosis, neuropathy can often be controlled.  If ignored, symptoms can intensify to persistent weakness, loss of sensation, chronic pain or disability.  

There are over 100 known types of peripheral neuropathy.  One third of all neuropathy patients have diabetic peripheral neuropathy (50% of all diabetics develop neuropathy).  A third of cases include a range of causes such as autoimmune disorders like CIDP, heredity, cancer, HIV/AIDS, nutritional imbalances, infections, and toxins.  One third of all neuropathies are “idiopathic” (unknown cause).  

About The Neuropathy Association
Founded in 1995, The Neuropathy Association is the leading national nonprofit organization providing neuropathy patient support, education, advocacy, and the promotion of research into the causes of and cures for peripheral neuropathies. The Neuropathy Association encourages and supports research to better understand neuropathy and also provides funding for promising scientific research through its research grants program, which has awarded over $850,000 in grants to date.   

The Neuropathy Association connects patients with one another through its nationwide network of members, regional chapters, medical Centers of Excellence, and 150 patient support groups.  There are fifteen Association-designated neuropathy medical Centers of Excellence located at major university and VA hospitals across the U.S.—serving patients, providing treatment, and conducting active research—including:

Banner Good Samaritan Medical Center (Phoenix, AZ)
• University of California at San Francisco 
• University of Southern California, Good Samaritan Hospital (Los Angeles, CA)
• University of Miami Miller School of Medicine (Miami, FL)
• University of Florida and Shands Jacksonville (Jacksonville, FL)
• Edward Hines, Jr. VA Hospital (Hines, IL)
• Louisiana State University HSC (New Orleans, LA) 
• University of Michigan (Ann Arbor, MI)
• Saint Louis University (St. Louis, MO)
• Columbia University Medical Center (New York, NY)
• Weill Cornell Medical College of Cornell University (New York, NY)
• Ohio State University (Columbus, OH)
• University of Kansas (Kansas City, KS)
• Vanderbilt University Medical Center (Nashville, TN)
• University of Utah (Salt Lake City, UT)

For more information, please visit www.neuropathy.org.

 

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