‘Lighting the Way’ for People With Huntington’s Disease

jennifer-goldman-mdBy Jennifer G. Goldman, MD, MS

Give light, and the darkness will disappear of itself. — Desiderius Erasmus

On May 18, 2017, a number of South American families living with Huntington’s disease had the chance of a lifetime: to hold an audience with Pope Francis I at the Vatican in Rome. This meeting was a collaborative effort between the medical communities in Venezuela, Colombia, and Argentina and the Huntington’s disease community worldwide to bring visibility to HD, reduce stigma, and offer a global stage for amazing individuals to share their stories and shine light on this debilitating condition.

Huntington’s disease is an inherited disease that causes certain nerve cells in the brain to degenerate or waste away. This degeneration causes uncontrolled movements, loss of mental capacities and emotional disturbance. According to the Huntington’s Disease Society of America, “Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s — simultaneously.”

People are born with the defective gene, but symptoms typically don’t appear until age 30 or older, often in the prime of a person’s life. The disease is passed from parent to child through a mutation in the normal gene, so if one of your parents has Huntington’s disease, you have a 50 percent chance of getting it.

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Progress in Finding a Cure For Huntington’s Disease

KathleenShannonBy Kathleen Shannon, MD

Huntington’s disease (HD) is an incurable hereditary disease of the nervous system that affects movement, thinking, mood and behavior.

The gene that causes Huntington’s disease was discovered in 1993, and it is now possible to insert the abnormal gene into various animals, then test drugs for potential effects to slow down the devastating condition.

A number of promising drugs have been identified in this way. However, this now means that it is critical to enroll research participants into human studies of these drugs as well as into studies that help to better diagnose HD and better design new human studies.

At this time, there are studies available for patients with early symptoms of HD as well as studies for people at risk for the disease and HD family members. For more information, please call Jeana Jaglin, RN, at (312) 563-2900.

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Kathleen M. Shannon, MD, is an associate professor of neurology at Rush University Medical Center. Her clinical practice focuses on Parkinson’s disease, Huntington’s disease, dystonia and other movement disorders.