One myth that recently caught our attention is the belief that individuals with psychiatric symptoms are less likely to experience chorea (involuntary movements), and vice versa. At Help 4 HD Virtual HIPE ~ Myth or Fact, we addressed this misconception a couple years ago so we thought it would be appropriate to bring it back around.
First and foremost, it's crucial to understand that HD is characterized by a triad of symptoms: motor, cognitive, and psychiatric. The way these symptoms manifest and interact can vary significantly from person to person. As Terry Tempkin puts it at the HIPE Myth or Fact Day, "When you've seen one person with Huntington's, you've seen one person with Huntington's."
The myth in question attempts to create a predictable pattern in an unpredictable disease. While it's natural for patients and families to seek certainty in the face of HD's challenges, the reality is far more complex. Let's break down why this is a myth.
Symptom Variability: The proportion and severity of motor, cognitive, and psychiatric symptoms can differ greatly between individuals, even within the same family. Siblings with similar CAG repeat lengths may experience entirely different symptom profiles.
Motor Symptoms Beyond Chorea: While chorea is the most visible motor symptom, it's not the only one. Some HD patients may never develop chorea but might experience other motor symptoms like dystonia, rigidity, or tics.
Psychiatric Symptoms as Early Indicators: Dr. Bird emphasizes that psychiatric symptoms can often be the first signs of HD, sometimes appearing years before any motor symptoms.
The desire to find patterns and predictability in HD is understandable. As patients and families, we often seek ways to prepare for and manage the challenges ahead. However, it's essential to recognize that this unpredictability is one of the most challenging aspects of HD.
Moreover, this complexity underscores the importance of individualized care plans. What works for one person with HD may not be suitable for another. It's crucial for healthcare providers, patients, and families to work together to develop tailored strategies that address each individual's unique symptom profile.
In conclusion, because an individual experiences chorea, it does not lessen the chances that the individual will experience psychiatric symptoms and vice versa. It is unfair to the community for myths like this to circle around because our community members who experience both uncontrollable chorea and severe psychiatric symptoms may wonder, "Why me? This isn't 'normal'." When, in fact, it is very common for individuals living with Huntington's disease to experience involuntary movement and psychiatric symptoms within their journey.
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