Clarifying some common misconceptions about Huntington’s

In my early 20s, I went to see my general practitioner because I’d been noticing my dad having symptoms of what I thought could be Huntington’s disease. In hindsight, he’d been displaying cognitive signs for a decade, but now the physical signs had started to show. The doctor told me with certainty that I’d be safe from Huntington’s because the disease only affected men. We now know, of course, that isn’t the case.

Another misconception about Huntington’s disease is that it is 100% guaranteed that children will inherit it from a Huntington’s-positive parent. Others have believed that one can inherit it only if they are conceived while a parent is symptomatic. Or that the disease is contagious. All of these are incorrect.

Luckily, I knew enough at the time — in the early 2000s — to correct the doctor. He subsequently confirmed it by checking the internet. The truth is that a person with one mutated copy of the huntingtin gene has a 50% chance of passing the mutation to his or her biological children. It shocked me that the medical community at large would lack such knowledge about the disease.

I eventually lost my dad to Huntington’s, a disease that has affected several generations of my family. My grandfather and great-grandmother also suffered the same fate, while I tested negative for it in the summer of 2023.

Recommended Reading

June 3, 2024 News by Marisa Wexler, MS

HDSA 2024: Study cites need for family psychological support

Better understanding the disease

Another misconception I’d been led to believe until recently was that the age of onset of the disease was the same for each generation of an affected family. When my family members started to show signs of it at a much earlier age than their fathers, this misconception confused me greatly and made me doubt what I was seeing.

According to Johns Hopkins Medicine, “If your mother is affected with [Huntington’s], it is more likely you will have a similar age of onset. If your father is affected with [Huntington’s], you have the potential of developing the disease at an earlier age than he did.”

Several people have also asked me if Huntington’s can skip a generation. Johns Hopkins answers this question by stating that the Huntington’s gene mutation “never skips a generation,” but “if someone dies young of another cause, no one might know that the person had the [Huntington’s] gene mutation.”

Another thing I learned was that while Huntington’s causes weight loss, it’s not necessarily attributable only to diet. Other factors, like behavioral problems, might be at play. My dad would grab at the spoon when we were feeding him, for example. We found that he ate better in a quiet room, away from others eating at the same time.

People with Huntington’s can also forget to eat or struggle with the cognitive and fine motor skills involved with cooking and eating. Plus, depression and apathy can also make those tasks difficult. Later on in the disease’s progression, a weakening of the muscles involved in chewing and swallowing make eating more difficult.

Some people may incorrectly believe that Huntington’s disease affects a person’s IQ, but that’s not the case. Rather, it affects the general cognitive functioning of the brain. To me, my family members who were affected by the disease retained their intelligence throughout the disease’s progression, but it seemed as if they were trapped inside their own body.

Huntington’s also isn’t as rare as once thought. One article published in 2010 noted that “Huntington’s disease might be twice as prevalent in the U.K. as it was previously thought to be.” Some of this might be due to misdiagnosis, the article noted, although better testing since then has likely diminished this possibility. Another reason, noted the article, which was published in the journal The Lancet Neurology, is that some people simply don’t want to know their status and choose not to have genetic testing.

According to the Cleveland Clinic, Huntington’s disease itself isn’t fatal, but rather the complications from it can be, causing such things as pneumonia or other infections and falls.

While doctors can treat some of the symptoms caused by Huntington’s, such as anxiety, depression, or involuntary movements, currently there is no cure for it.

I hope that with greater awareness about the disease, these misconceptions and others will become a thing of the past, paving the way for greater understanding, care, and help for the patients who need it.

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.