Posted December 28, 2011, by LaVonne Goodman, M.D.

Passionate responses came fast and furious from Huntington's disease (HD) facebook communities following publication of articles by Gene Veritas about real-life dilemmas of two HD families who have made difficult reproductive choices at the extreme ends of the choice spectrum. These two courageous and thoughtful reports hit an emotionally charged nerve:  Part 1, a couple who chose to abort an expanded-gene fetus that was subsequently donated to research, and Part 2, an 18 year old woman with juvenile-onset disease who with the support of her family has chosen to continue her pregnancy, which if positive for the expanded gene, her child will likely have juvenile onset disease as well.

No question that HD families face hard reproductive choices.  What is known about how families make these decisions?

Posted Sept 12, 2011 by LaVonne Goodman M.D.

During my years as an internal medicine physician, I have used standard of care guidelines for my patients with conditions like diabetes and heart disease. Guidelines are developed by experts in each disease who translate clinical trial evidence and/or expert experience into recommended care patterns for use in medical offices or at the bedside. When followed, guidelines have been central to improving the quality of care provided by all physicians whether they are specialists or generalists.

So when I began taking care of Huntington's disease (HD) patients, I looked for standard of care guides to help me provide quality medical care.  What I found was lack of information . .