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Open Up: When education and awareness about living with a chronic neurologic disease replace silence, it enriches us all.

Section Editor(s): Avitzur, Orly MD, MBA, FAAN; Editor-in-Chief

doi: 10.1097/01.NNN.0000513010.03334.67
Departments: From the Editor

When awareness about living with a chronic disease replaces silence, it enriches us all.



You may remember Jamie-Lynn Sigler as the actress who played the troubled teenaged daughter of Tony and Carmela Soprano on the TV show The Sopranos, which ran from 1999 to 2007. Sigler, who was diagnosed with multiple sclerosis (MS) at age 20, kept silent for almost 15 years, as so many people with neurologic illnesses do, because of the fear that it would affect her ability to get work. She eventually told a few cast members about her diagnosis, including the late James Gandolfini and Edie Falco, who played her parents on the series. As she reveals in our cover story, she decided to go public last year due in part to her reluctance to place the burden of keeping that secret on her 3-year-old son, Beau, as he grew up.

This issue coincides with National MS Education and Awareness Month. Established in 2003 by the Multiple Sclerosis Foundation and affiliated groups and observed every March, the campaign is designed to raise public awareness of the disease. In MS, damage to the myelin sheath—the insulating layer that forms around nerves, including those in the brain and spinal cord—and to the nerve fibers themselves, delays or blocks the transmission of signals between the brain and spinal cord and other parts of the body. It causes a variety of neurologic symptoms, depending on where the disruption occurs.

About 2.5 million people worldwide live with MS, which most commonly develops between the ages of 20 and 40 and affects women two to three times more often than men. When I was in my neurology residency program, no specific medications were available to treat MS. Today, as of this spring or summer, 15 different disease-modifying drugs will be available. Knowing which one to choose can be confusing, but in our Eye on Therapy department, experts break it down for anyone who needs to start or change treatment.

In MS, as well as in most chronic neurologic conditions, it's important to talk to your neurologist about what to expect from treatment. As Sigler admits, when she was first prescribed an injectable drug, she took it inconsistently, a decision she now regrets. Her ambivalence at the time was not unusual. When my patients tell me they've stopped their medication, I am grateful. It allows us the opportunity to work together to find solutions that will reassure us both. Many such strategies are discussed in our Living Well column.

As with every issue, we also include stories about how to ensure the health of your brain, including one on sleep and another on smart ways to guard against injury and cognitive loss throughout various stages of your life. Toward that goal, we also include some yoga-based exercises that can be adapted for almost any reader.

Finally, we hear from people living or caring for someone with a neurologic condition, including first-hand accounts from twin daughters of a father with Lewy body dementia and a profile of a skier and golf and tennis player who finds ways to stay active with Parkinson's disease. We value these individual accounts of hope and candor. As always, we welcome your stories, too, and invite you to continue to send letters and emails sharing your experiences, concerns, and requests for coverage of topics vital to you.

Orly Avitzur, MD, MBA, FAAN


© 2017 American Academy of Neurology