How the Internet Has Changed the Huntington’s Disease Experience

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by Steven Beatty |

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The internet has transformed how we access information and learn new things. With the press of a button or a swipe on a screen, we can be instantaneously connected to limitless information about whatever topic is on our mind.

This effortless accessibility can have both positive and negative consequences. Online content is not consistently reliable, trustworthy, or presented in a way that is easy for a layperson to understand.

I’m embarrassed to admit that I’ve lived a double life: I’m fluent in both Google searches and card catalogs. I’m old enough to have experienced the joy of online job searching and a trip to the store to buy a newspaper to circle ads in the classified section. There’s no doubt that times have changed, and the internet has been the catalyst for much of that change. I consider myself lucky to have lived on both sides of it.

Pre-internet Huntington’s disease

Historically, Huntington’s disease (HD) was hidden in the shadows. The condition was misunderstood and feared, and families affected by it often tried to conceal their secret. The rare nature of HD made it an anomaly in society. Unless a person had been directly affected by the disease, it was unlikely they would have known anything about it.

Before the current prevalence of news on-demand and social media, the chances of someone unfamiliar with Huntington’s disease randomly stumbling upon an article or a video about it was unlikely. Awareness of HD now spreads organically, such as when Facebook friends of friends of friends share posts and information about fundraising events or news articles about HD.

Coincidentally, the dawn of the internet was rising in the early 1990s at a time when researchers identified the gene responsible for HD. This groundbreaking discovery changed the lives of many families. Those at risk now had access to genetic testing for the HD mutation. Scientists knew where to focus their attention in the search for an effective treatment. The Huntington’s disease experience began to change — and despair turned to hope.

Stigma and fear around mental health issues were also diminishing at that time. The practice of locking up HD symptomatic patients in mental health facilities was becoming less common. Families felt the veil beginning to lift as society became more educated about conditions that affected the brain.

Post-internet Huntington’s disease

As the years advanced and the internet became part of our daily lives, another catalyst brought about a further shift in the experiences of those affected by Huntington’s disease: social media. The organic spreading of awareness about HD and mental health through platforms like Facebook helped to reduce the stigma and to bring HD families out of the shadows.

Now, for example, we have Facebook groups where thousands of people can share information and news about Huntington’s disease in real time. We can discuss our personal stories and share our fears on our smartphones. We can also access scientific literature, learn more about HD from trusted resources, and self-publish books about living with the disease. We can follow HD gene-positive users on Instagram and think, “Wow, I’m not the only one!”

We’ve come a long way from the days of card catalogs and distant library visits to access information about Huntington’s disease. Now, it’s a mere tap away.


Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.


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