Your proactive fight against HD

Working the Triad

Many members of the HD Lighthouse community are "working the triad" in their individual proactive fights against Huntington's Disease. Their successes are recorded throughout HDAC.org and HDlighthouse.org.

Join us in our proactive battle.

Fallacies about HD

You have probably heard some fallacies about HD. You may have seen cruel and devastating descriptions of HD. Maybe you were told that HD is hopeless, that there is no treatment that can reverse or even delay HD. That is the conventional wisdom about HD. It is false. HD can be reversed. Onset can be delayed. One can seek and achieve a quality life.

You should not take things written about HD as gospel truth. If something does not seem right it is for you to challenge it, to learn and grow. Chances are that you already know or will learn more about HD than the professional health care workers that you work with. As you learn and grow it is up to you to educate others about HD. Do not expect smooth sailing Some will stubbornly cling to beliefs that are not supported by research. All too often the good intentions of health care workers cause harm.

The Evidence

There have been no large scale HD double blind trials to meet the absolute standard of evidence that we all desire. There is some level of evidence and a rational for everything related to the HDL Triad. For instance there is validating hard evidence that creatine extends the life of HD mice; that mice given EPA from birth do not develop measurable symptoms . There is evidence that exercise, diet and stress have a large effect on HD mice. There is some probability that this evidence will apply to humans. The HDL Triad is a low risk win for health in general and potentially a big win for folks with the mutant gene. I think it is important that folks learn about and discuss the available evidence and make their own decisions.

Life At Best

Consider that life, even without HD, is terminal. Folks normally live about 72 years so half the game is over typically at 36 years or sooner for half of all folks. Statistically a quarter of life is over before we leave our teens. Memory decline for most starts in our 20s. At 30 our bodies are well into a course of many degenerative changes that will bring certain death. A full body scan or genetic testing can suggest what will kill us. Science can also suggest healthy life styles. A good diet, exercise and spirituality can make for the best life no mater how long we live or what eventually kills us.

HD is typically a late onset disorder. Most folks start symptoms in their forties or fifties. Half will live about 18 additional years if other age related factors are discounted. Over half starting symptoms in their sixties will die from age related causes other than HD. If you have HD you have a degree of protection against most cancers. You have an increased chance of developing and dying from the complications diabetes.

At least one person without symptoms has tested positive for the gene and committed suicide. There is increasing probability that others doing so may have their obituary in the same news paper that announces the cure for HD. Knowing your CAG count will not tell you when you will become symptomatic or how long your life will be. Statistics do not apply to individuals. Besides that you have a large degree of control if you have a plan based on the best available information.

Fighting Back

HD is sometimes described as a triad of motor, cognitive and psychiatric symptoms. HD is a tough enemy. Unchallenged HD is an insidious devil. You can fight back. Your triad is exercise, diet and spirit. Learn all you can about each as it relates to HD. Do not give HD any advantages.

The Future

All are mortal. We don't have to learn how to die. That will happen no matter what genes we have or what we do. Life is limited and precious. All can learn to live the best possible life. No time is a good to have HD but great things are happening now in HD research. Supplements and medications can delay onset, slow progression, and extend the lives of mice genetically engineered to have Huntington's Disease. RNA interference can shut the HD gene off in mice and reverse symptoms. An enriched environment extends HD mice life. Exercise extends HD mice life.

The following is a starting point. If you decide to have a triad for yourself or loved ones, we would like to hear about it. Post your progress on the HDAC Support forum so that we can share in your success.