Huntington's Disease - Help Raise Awareness

HUNTINGTON'S DISEASE A DEVASTATING DISORDER. A COMMUNITY OF HOPE. WHAT IS HD? A HISTORY OF PROGRESS Huntington's disease (HD) is an inherited brain disorder that results in the progressive loss of mental and physical capacities. The hereditary and complex nature of HD means it's not just patients, but an entire community that's affected. 1872 1 George Huntington developed the first clear and succinct de- scription of this hereditary disor- der-at the young age of 22. IN EVERY 1967 10,000 The Committee to Combat Huntington's Disease (now the Huntington's Disease Society of America) was founded by Marjo- rie Guthrie, wife of folksinger and HD-sufferer Woody Guthrie. AMERICANS HAS HD Research, awareness, and management have come a long way-through the support of caregivers, families, health- care professionals, and researchers. 1968 Milton Wexler, a psychoanalyst whose wife suffered from HD, formed the organization that would become the Hereditary Disease Foundation. Its mission is to find treatments or cures for HD or other inherited illnesses. 1983 A DNA marker genetically linked to the HD gene was discovered by Nancy Wexler (daughter of Milton Wexler), Mike Conneally, James Gusella, and other scientists. 1993 The gene that causes HD was identified, making it possible to confirm a diagnosis of HD through genetic testing. The dis- was the result of 10 years COovery of work by more than 50 rators known as the Huntington's Disease Collaborative Research Group (nicknamed the "Gene Hunters"). Since then, there have been enormous leaps in HD sup- port and research. 2000 The National Youth Alliance was founded, with the goal of helping support, educate, and motivate youth to get involved in the battle against HD. 2008 The Genetic Information Non- discrimination Act (GINA) was passed, protecting people from discrimination by health insurers and employers based on DNA information. 2013 This year marks the 20-year an- niversary of the identification of the HD gene. HD AFFECTS BOTH MEN AND WOMEN AND ALL ETHNIC GROUPS. %3D A CHILD OF A PARENT WITH HD HAS A 50/50 CHANCE OF INHERITING THE EXPANDED HD GENE HD DOES NOT SKIP GENERATIONS. HOWEVER IF YOU DO NOT INHERIT THE GENE, YOU CANNOT PASS IT ON. Everyone has the HD gene. However, only those who inherit the expansion of the gene will develop HD. DID YOU KNOW? SYMPTOMS Can be described in 3 CATEGORIES Cognitive Emotional Physical FORGETFULNESS PERSONALITY CHANGES IMPAIRED JUDGMENT INVOLUNTARY MOVEMENTS MOOD SWINGS (KNOWN AS CHOREA) DISORIENTATION OR CONFUSION DEPRESSION UNSTEADY GAIT DIFFICULTIES WITH SPEECH AND SWALLOWING Who's Affected? BETWEEN THE AGES OF 30-50 AND IS WHEN SYMPTOMS USUALLY APPEAR. BUT IT'S NOT JUST ADULTS Although less than 10% of peo- ple with HD develop symptoms before the age of 20, juvenile HD affects teens and children. IN THE U.S. ALONE, ABOUT 25,000 PEOPLE HAVE HD. THAT IS ENOUGH PEOPLE TO FILL MADISON SQUARE GARDEN NEARLY 12 TIMES. MORE THAN Moving Together" Lndbech A QUARTER OF A MILLION OTHERS ARE AT RISK. Research continues to push forward, and awareness continues to grow. But, there's still work to be done. By Moving Together, we can advance the dialogue about Huntington's disease. Join the conversation at www.facebook.com/Moving TogetherForHD SPREAD THE WORD. RESOURCES: Huntington's Disease Society of America (HDSA) www.hdsa.org Hereditary Disease Foundation (HDF) www.hdfoundation.org Huntington's Disease Youth Organization (HDYO) www.hdyo.org HDBuzz www.hdbuzz.net REFERENCES: 1. Glimm A. Gene Hunter: The Story of Neuropsychologist Nancy Wexler. Washington, DC: Joseph Henry Press; 2005. 2. Huntington's Disease: Hope Through Research. National Institutes of Health. National Institute of Neurological Disorders and Stroke Web site. http://www.ninds.nih.govidisorders/huntington/detail_huntington.htm. Updated August 13, 2010. Accessed December 26, 2012. 3. Huntington's Disease Society of America. HDSA Web site. http://www.hdsa.org/. Accessed December 26, 2012. 4. Huntington's disease. U.S. National Library of Medicine. PubMed Health Web site. http://www.ncbi.nlm.nih.gov/pubmedhealth/ PMH0001775/. Updated April 30, 2011. Accessed December 26, 2012. 5. Marshall FJ. Clinical Features and Treatment of Huntington's Disease. Movement Disorders. 2004: 589-596. 6. National Youth Alliance. Huntington's Disease Society of America. HDSA Web site. http://www.hdsa.org/nationalyouthalliance/nya-1/index.html. Accessed January 10, 2013. 7. Quarrell OWJ. Huntington's Disease: The Facts. 2nd ed. New York, NY: Oxford University Press Inc.; 2008. 8. Walker, FO. Huntington's disease. The Lancet. 2007; 369(9557): 218-228. ©2013 Lundbeck. All rights reserved. CNS300 02/2013