Juvenile Huntington’s Disease Short Story Series: Overview

The following is a series of fictional short stories from the perspective of someone with Juvenile Huntington’s Disease. These works do not represent the experience of any one individual, nor do they aim to encompass the entirety of an illness experience such as JHD. Rather, these stories strive to capture and explore themes presented across different JHD and HD experiences through a collection of punctuated narratives. Hopefully, engaging with JHD through storytelling will allow readers to better empathize with, and understand the nature of, the experience of this illness.

Archived Posts

These are a list of posts which are considered outdated, but still contain some useful information. Take a look here for some of our older posts!


Drugs and Supplements

This is a list of drugs and supplements that are being investigated as a potential treatment for Huntington’s disease. This list is grouped by mechanism; each of the groups represents a different problem that HD causes in the brain, and the drugs that might fight that problem. For each group, the problem is described in the ‘About’ article, and the rest of the articles describe the drug itself and any research that has been performed. For an over-all introduction to Drugs and Supplements, click here.


For Kids

Check out the For Kids section of our website!


HD in the Media

Despite the fact that many people are not completely aware of HD and how it works, the disease has become one of the favorite “dramatic diseases” of mainstream news media and the entertainment industry. References to HD in popular culture include, but are not limited to, books (as evidenced by our site’s Literature Corner), television shows, films, radio programs, and newspaper articles.

The purpose of this section of our website is to approach all depictions of HD in the media with a critical lens media outlets often dramatize their depictions of medical conditions in an attempt to draw in viewers and readers. Symptoms are portrayed as much worse than they are in reality, incorrect diagnoses are provided, and false information is presented to audiences around the world.

To correct these misconceptions, members of the HOPES team will be going through various depictions of HD in the media to determine what aspects of HD are presented properly and what aspects are misrepresented. This section includes a synopsis of the media’s depiction of HD as well as a discussion of whether it was realistic and medically accurate.


Literature Corner

Here you will find reviews on published resources related to Huntington’s disease.


Managing HD

Though people with the HD allele will eventually show symptoms, there are many lifestyle choices that can make the disease easier to manage. People with HD can engage in many activities – such as physical therapy and exercise – that help them deal with symptoms. Also, scientists have recognized that genes only tell part of the story, as described here. There is great variability in age of onset and progression of disease, only about 40% of which can be explained by the number of CAG repeats – and lifestyle choices might account for some of that variability. So while no one can choose their own genes, people at risk for HD can choose a healthy lifestyle.



Check out the Stories section of our website!