What Is Chorea? A Helpful Website Provides Answers
A columnist shares a resource for HD families trying to understand chorea
Huntington’s disease (HD) is hereditary. Because the father of my wife, Jill, was gene-positive for HD, she knew she had a 50% chance of getting the disease.
Years ago, Jill told me to be honest with her. “If you think I’m showing symptoms, I want you to tell me,” she said.
About five years ago, I started noticing symptoms. Her eyes twitched, and she had slight trembling in her fingers. Involuntary, brief, and abrupt muscle movements, known as chorea, are one of the visible signs that someone has this terrible neurodegenerative illness.
After I told Jill my observations, we arranged for a genetic test, which confirmed in 2018 that she had the faulty gene that causes Huntington’s. Because so many people on her father’s side of the family had it, Jill is very familiar with the disease. Yet sometimes, as we’ve noticed from questions our readers send us, some people are not as informed as we are.
Another tool in the toolbox
One of the reasons Jill, who normally is a very private person, committed to collaborating with me for this column is to help others. Sharing information is one of the ways in which we are happy to help. One site I came across that is informative about chorea — called Honestly HD — was created last year by Teva Pharmaceuticals.
Last fall, the company made headlines when it was announced that a three-year study had shown that long-term treatment with Austedo (deutetrabenazine) safely led to sustained reductions in chorea for people with HD. My wife is currently taking Austedo to help her deal with chorea. For transparency, we were not compensated by Teva to write this column, we simply want to share information we found helpful.
Honestly HD provides information to help people understand chorea. The company also created social media feeds on Twitter and Facebook to share resources and stories and build community.
Jill and I appreciate when organizations boost awareness with well-designed sites that offer helpful resources and tips to make life easier for families affected by HD. For instance, Honestly HD has downloadable guides that explain chorea and how to talk to your doctor about it.
In a Help 4 HD podcast, Nina DeLucia, director of consumer marketing for Austedo at Teva Pharmaceuticals, mentioned another wonderful section of the website called “Planning for Independence.”
“We try to really help folks think about chorea and what to consider when thinking about when to treat [it],” DeLucia said. “We recognize this is quite a journey, and as a family is going through their HD journey, they’ll begin to adapt to the changes. They’ll have things they need to do as different symptoms progress.”
It’s rare to come across a site that focuses on one of the major symptoms of HD, which is why I think it’s important to highlight it. The section that Jill and I found particularly helpful was the one DeLucia mentioned in her podcast interview.
By showing some steps that can help those with HD decide when and how to address involuntary movements as their chorea worsens, the section offers wise and practical tips. At times during this HD journey my wife is going through, it’s easy to feel overwhelmed because there are so many damaging aspects of the disease: uncontrolled movements, loss of thinking ability, and psychiatric problems.
However, when I recently saw the Honestly HD site, it lifted my spirits a little, as it gave Jill and me some hope that at least one of the most common early symptoms — chorea — can be understood and managed in a way to make us feel we have a little bit of control in our lives. Because honestly, one of the things that makes this rare disease so damaging is that it clearly demonstrates the control its devastating power has over people.
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, and are intended to spark discussion about issues pertaining to Huntington’s disease.