Thank you for taking a look at this page. May of you already know, and some have yet to learn about how Huntington's Disease affects my life. During my birth, my mother displayed some abnormal movements that soon were determined to be Huntington’s Disease. Because she was adopted at birth, nobody in our family was aware she was even at risk for this horrible disease. While growing up, my dad and I took care of her full time until eventually we could not safely leave her side. At that point we made a decision to put her in Ingleside Nursing Home in Mt. Horeb, where they took wonderful care of her.  On March 2nd 2013 she lost her long battle with this disease on the evening of the HDSA Re-Prom in her honor. Her memory will forever live on and we will not give up the fight against this disease.

Being a genetic disorder, I have a 50% chance of also getting Huntington's Disease. I have made the decision to not take the test and am living my life to the fullest at risk

Huntington's Disease (HD) is a devastating, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington's Disease profoundly affects the lives of entire families: emotionally, socially and economically.

Named for Dr. George Huntington, who first described this hereditary disorder in 1872, HD is now recognized as one of the more common genetic disorders. More than a quarter of a million Americans have HD or are "at risk" of inheriting the disease from an affected parent. HD affects as many people as Hemophilia, Cystic Fibrosis or muscular dystrophy.

Early symptoms of Huntington’s Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.
HD typically begins in mid-life, between the ages of 30 and 45, though onset may occur as early as the age of 2. Children who develop the juvenile form of the disease rarely live to adulthood. HD affects males and females equally and crosses all ethnic and racial boundaries. Each child of a person with HD has a 50-50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease. In 1993, the HD gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the HD gene. The test cannot predict when symptoms will begin. However, in the absence of a cure, some individuals “at risk” elect not to take the test.

Since the discovery of the gene that causes HD, scientific research has accelerated and much has been added to our understanding of Huntington’s Disease and its effects upon different individuals. By continuing to increase our investment in both clinical and basic HD research each year, breakthroughs in treatment – and a cure – will be forthcoming.

My mom has suffered from this disease for since I was 5 years old. I never got a chance to know her true personality, but am well aware she is and was an amazing woman. As a child, she was A straight A student, shy, and nice to everybody. Other people would always come before herself. She would never forget a birthday, and would never forget to let someone know how much they are loved. I love my mom very much, and I would give anything to have grown up with her not being sick. Now I just pray that she is still enjoying life, and I also pray for a cure. Since the age of 16 I've been very active with the Huntington's Disease Society of America. I was also a founding member of the Huntington's Disease Society of America's National Youth Alliance. For more information on the NYA please go to: http://www.hdsa.org/nya.html.

Locally, I serve on the board of the Huntington's Disease Society of America's Wisconsin Chapter: http://www.hdsa.org/WI

It is my goal to educate anybody willing to listen about Huntington's Disease. If you have any interested in me speaking to your group please contact me at: shana@shanaverstegen.com
 
 
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