Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
I am one of those at risk numbers with a 50/50 risk of developing this disease– I am a face of HD. And while I may know a tough road lies ahead for me, and my family I will not walk down it quietly and thankfully for amazing support of my friends & I won’t do it alone either. My dad’s admittance to the nursing home and all the difficulties that have come with it have inspired me to do everything in my power to make a difference and move forward with finding a cure! To say this year has been difficult would be an insulting comparison with reality, my close friends, husband, family know all too well, but have stuck by my side in my most challenging year yet. But nothing inspires me more than a challenge!
Imagine Parkinson’s terrible uncontrolled movements, Alzheimer’s brain power loss, the speech difficulty and the rest of the endless list of symptoms all rolled into one. It makes even the simple task of putting on your clothes impossible, or telling someone what you can even do to help can be a major task when unable to communicate or use the brain power to put the thoughts together and speak. That is just a teeny tiny glimpse into the daily struggle which is why I am so passionate about educating people and becoming a force against it.
- Personality changes, mood swings & depression
- Forgetfulness & impaired judgment
- Unsteady gait & involuntary movements (chorea)
- Slurred speech, difficulty in swallowing & significant weight loss
Approximately 30,000 Americans have HD, but the devastating effects of the disease touch many more. Within a family, multiple generations may have inherited the disease. Those at-risk may experience tremendous stress from the uncertainty and sense of responsibility. In the community, lack of knowledge about HD may keep friends and neighbors from offering social and emotional support to the family, fostering unnecessary isolation. The Huntington’s Disease Society of America has a nationwide network that provides support and referrals for individuals with HD and their families. (VIA HDSA.org)
http://www.HDBuzz.net is one of my most reliable websites to get current HD information. They do a phenomenal job at summarising the many clinical trials without bias in simplified terms.
http://www.HDSA.org also has quite a bit of pertinent information on their site as well.