What Is Huntington’s Disease?

Huntington’s Disease is a terminal neurodegenerative disorder that affects the brain. It breaks down into three different categories of affliction: cognitive, motor, and psychiatric.

When carrying the dominant Huntington gene, your children have a 50% chance of being at risk for developing the disease as well; with high-risk pregnancies being an analogy to flipping a coin. Get tested.

In recent reviews of HD prevalence, scientists have estimated that for every 100,000 people in North America, approximately seven will have Huntington’s disease.

In case you were wondering what a Huntington’s genetic test looks like, I’ve attached mine:

The “Allele 1” is from my father (CAG count of 43) and

“Allele 2” is from my mother (normal CAG repeat of 18)

Huntington’s causes involuntary jerking or writhing movements, slow or abnormal eye movements, difficulty with speech or swallowing, difficulty organizing, prioritizing, or focusing on tasks, perseveration (the repetition and fixation of a response), lack of awareness, depression, insomnia, loss of bodily functions, fatigue and loss of energy, and many other debilitating symptoms.

My prognosis: death by age 55-early 60’s with my CAG count at 43. (CAG count determines the severity of Huntington’s Disease. More CAG repeats = more severe.)

Huntington’s Disease Youth Organization’s (HDYO) explanation of Huntington’s Disease: https://en.hdyo.org/you/articles/57

Clinical Trials

Huntington’s Disease friends and family, if you, your loved one, or family member has been diagnosed with or is at risk for Huntington’s Disease, clinical trial data is vital. Without enough data on Huntington’s Disease, trials cannot progress. The ENROLL-HD Trial is a great place to start.

There are also trials such as the PREDICT-HD 3.0 trial, which is currently enrolling and I am collaborating to see if I am among the 1,400 participants eligible.

08/30/2022: success. I was able to provide my data and complete the study. Minus a blood draw and minus a lumbar puncture.