Stigma, or the devaluation of a person is a huge and pervasive problem in HD. In varying degrees, it burdens virtually all in families touched by this disease. Stigma is a two-edged sword: an outside cutting edge from public and intra-family sources, and an equally destructive inside cutting edge that is self-directed.

The factors that may contribute to stigma in HD have never been studied. But learning from studies of stigma in other diseases, it is likely due to a combination of several characteristics that define the disease: chorea, mental illness, cognitive loss and genetic basis of illness. Part 1 of this series will focus on chorea and how this symptom may contribute to stigma.

First results from RESPOND-HD have been published about genetic discrimination and social stigma experienced by individuals drawn from those who have tested positive or negative for the expanded HD gene, and those who have positive family history, but have not gene tested. This study showed that overall a large number (46.5%) of those surveyed reported experiencing discriminatory events or stigma. However, a greater fraction (71.5%) of the tested group reported these events than the untested group (28.5%).

This type of study that measures the extent of the stigma is greatly needed. But shame on us if we stop there.

In a study sponsored by CHDI Foundation, an international group of TRACK-HD investigators, with the help of several hundred individuals from Huntington's (HD) families have described potential MRI biomarker tests that may point the way to speedier drug trials for pre-manifest (preHD) and early HD individuals. These are results for a one year study, but those from the second year -- now being analyzed -- will be necessary to confirm and extend these results.

They did this by correlating change in sensitive MRI scans to changes in motor and cognitive tests in ways that will be necessary for regulatory drug approvals.

In similar articles in the New York Times, science writers Nicholas Wade (2009) and Gretchen Reynolds (2010) have reported on the complex nature of responses to antioxidant supplements used to prevent injury with exercise, and cited several scientific studies suggesting that more may not be better. These studies show that high dose antioxidants can indeed prevent the expected rise in free radicals in injured muscle -- but these same high dose antioxidants can prevent activation of protective systems that adapt to the injury -- which in turn may cause harm over the long term.

Might there be any similar concerns about the long term use of antioxidant supplements in Huntington's disease? Is there potential for harm?

If we are serious about clinical trials to address pre-manifest and very early Huntington's disease (pre-HD), we must begin by completing the FuRST-pHD study. A recent study of PREDICT-HD participants indicated just how vital this work is. YOU can help us reach the goal for completion of this important study by December 2010.

Save the date: October 16, 2010 to attend the Huntington Study Group's (HSG) fourth annual clinical research symposium to be held in San Diego, California. Frances Saldana, an important family advocate and several top HD clinical research scientists will be among the featured speakers. Results from clinical studies and trials will be reported either during this session or in the accompanying poster presentations. Following the symposium Charles Sabine will kick-off a clinical study and research workshop for HD families. It promises to be a rewarding day.

And whether or not you can make it to San Diego, please take the time to fill out the accompanying HSG survey -- and give your opinions about HD clinical studies and trials.

Dr. Edmondson is a medical physician and a psychiatrist from Duke University, North Carolina who gave several workshops at the recent HDSA convention in Raleigh. She is also a founder of the North Carolina Center for the Care of Huntington's Disease NC-CCHD), a new and exciting organization that provides education, medical and social service care for Huntington's (HD) families in North Carolina. And very importantly she belongs to an HD family and brings a personal perspective to care.

In the "Recognizing Trigger Behaviors" workshop she first spoke of empathy or the capacity to think and feel the inner life of those who have HD. It was from this perspective that she talked about irritability in HD: What it is, why it happens, how it feels for both the HD person and care-partners, how to understand it, and tips to control it.

Huntington's experts from the Huntington's Study Group (HSG) and the European Huntington's Disease Network (EHDN) are working to create practice guidelines for the care of Huntington's patients. Creating rational practice guidelines is a daunting task, but will be essential for improving care when too often the majority of physicians have been given little or no information.

Though work is being done on practice guidelines, it takes a lot of time. It will probably take an even longer period of time to change physician practices. In an attempt to fill the gap --in addition to the HDDW treatment pages -- we will begin a major focus on drug and non-drug treatments more recently reported for HD.

Let's begin . .

Abilify is the brand name of a relatively new antipsychotic drug initially approved in 2002, which is used in the treatment of schizophrenia, bipolar disorder and depression. Though this drug has been available for almost a decade, it's use in Huntington's disease (HD) is more recent, with the first scientific report of benefit for HD appearing in a single case report in 2008. Subsequent scientific publications of small studies on the use of Abilify in HD report positive treatment effects for psychosis, chorea and a trend toward benefit in depression and cognition.

However great care should be taken when the drug is combined with other antipsychotics or higher doses of SSRI antidepressants.

The nocebo effect is the opposite of the placebo effect. Nocebo effects occur when there is a suggested or expected negative medical outcome. The nocebo response can have effects on symptoms: in a study when doctors warned a group of patients that a procedure would be extremely painful, they experienced more pain than the group who were not given this warning. The nocebo response may also have effects on the course of disease: in a study of risk factors for heart disease, a group of women who believed they were prone to heart disease had an increase in death rate due to heart disease, 4 times greater than the group who had all the same risk factors except the belief they were prone to heart disease. Think sick, be sick. Might this effect occur in Huntington's?