When someone is diagnosed with Huntington’s disease, it’s not just a medical label-it’s a life shift. There’s no cure. No magic pill. But there is understanding. And with that, there’s control. For families facing this, the real battle isn’t just against the movements, the memory loss, or the mood swings. It’s against the silence, the confusion, and the lack of a clear path forward.
The Genetics Behind Huntington’s Disease
Huntington’s disease doesn’t come out of nowhere. It’s passed down, gene by gene, like a ticking clock in your DNA. Every child of a parent with HD has a 50% chance of inheriting it. No exceptions. No luck. Just biology. The culprit is a single gene on chromosome 4 called HTT. Inside this gene, a three-letter code-CAG-is repeated too many times. Normal people have 10 to 26 repeats. If you have 40 or more, you will develop HD. Between 36 and 39? You might, or you might not. And 27 to 35? You won’t have the disease, but your kids could inherit a longer version and be the first in the family to show symptoms. This isn’t random. The number of repeats tells you a lot. More repeats usually mean earlier symptoms. Someone with 55 repeats might start showing signs in their teens. Someone with 42 might not notice anything until their 40s. And if the mutation comes from the father, it’s more likely to grow longer-sometimes by 10 extra repeats-making juvenile HD more common in sons and daughters who inherit it from their dads. Genetic testing can tell you if you carry the gene. But it’s not a decision made lightly. Over 70% of people at risk delay testing, even when counseling is available. Why? Because knowing doesn’t change the outcome. It only changes how you live.Chorea: The Movement That Doesn’t Stop
Chorea is what most people picture when they think of Huntington’s. It’s the dance. The jerks. The sudden, uncontrolled motions that seem to come from nowhere. A hand might twitch while eating. A foot taps while sitting. The head jerks during conversation. These movements aren’t voluntary. They don’t stop when you’re tired. They vanish only in sleep. Doctors measure chorea using the Unified Huntington’s Disease Rating Scale. A score of 1 means mild, barely noticeable. A score of 4? Constant, full-body flailing. In early stages, chorea is mostly in the fingers and face. Later, it spreads to the arms, legs, torso. Then comes something else: stiffness, slowness, freezing. Chorea fades as the brain loses more cells-but the damage doesn’t. The root cause? Brain cells in the striatum die off. These are the neurons that help control smooth, intentional movement. When they’re gone, the brain can’t filter out unwanted motion. The result? Your body moves on its own. There are two FDA-approved drugs for chorea: tetrabenazine and deutetrabenazine. Both reduce movements by about 25-30%. But they come with heavy side effects-depression, drowsiness, even suicidal thoughts. One in five patients can’t tolerate them. A third option, valbenazine, came on the market in 2023. It’s slightly less likely to cause mood problems, but it’s expensive. Many patients skip these drugs entirely because the trade-off feels worse than the chorea.More Than Movement: The Hidden Symptoms
Huntington’s isn’t just about dancing. It’s about forgetting names, losing focus, struggling to plan a meal. It’s about sudden anger, deep depression, or withdrawing from everyone you love. Cognitive decline hits early. People start missing appointments. Forgetting to pay bills. Getting lost in familiar places. By the time chorea becomes obvious, the brain has already been changing for years. That’s why some people are diagnosed after a spouse notices they’ve become clumsy with money-or after a child fails a school test they used to ace. Psychiatric symptoms are just as common. Up to 40% of HD patients have major depression. Suicide rates are 7-10 times higher than in the general population. Irritability, apathy, obsessive thoughts-these can be the first signs. And they’re often misdiagnosed as bipolar disorder or schizophrenia. That’s why care can’t stop at neurology. You need psychiatrists. Psychologists. Social workers. People who know that a mood swing isn’t just “being difficult”-it’s a symptom of a dying brain.
Care Planning: The Only Real Strategy
No drug can stop HD. But good care planning can change how long you live-and how well you live. Specialized HD clinics-there are 53 in the U.S.-do something most general neurologists don’t: they plan ahead. They don’t wait for crises. They talk about it early. Within six months of diagnosis, they help patients write advance directives. They set up power of attorney. They discuss where they want to live when they can no longer drive, cook, or dress themselves. These conversations aren’t easy. But they’re essential. Patients who do this live 2.3 years longer on average. Why? Because they avoid hospital trips for pneumonia, falls, or suicide attempts. They get the right help at the right time. By year five, most people need help with daily tasks-buttoning shirts, brushing teeth. Occupational therapy helps. By year ten, speech therapy becomes critical. Swallowing weakens. Choking risks rise. A simple diet change-pureed foods, thickened liquids-can prevent aspiration. By year 15, most need full-time care. Around 89% end up in residential facilities. The cost? Over $125,000 a year. Insurance rarely covers everything. Many families spend $5,000 or more out of pocket each year just for therapies, equipment, or home aides.The Human Side: Caregivers and Families
The hardest part isn’t the disease. It’s watching someone you love disappear while they’re still here. Caregivers spend an average of 15 hours a week managing appointments, medications, insurance, and emergencies. Many juggle jobs, kids, and aging parents too. One Reddit user wrote: “I’m 32. My dad has HD. I’m his caregiver. I haven’t had a vacation in five years. I don’t know how to say ‘I need help’ without feeling guilty.” Physical therapy helps maintain mobility. Aquatic therapy-swimming, water exercises-is 35% more effective than land-based workouts for balance. But only 32% of patients get it, mostly because it’s not covered. Genetic counseling is available to 95% of at-risk people in specialty centers. But outside those clinics, only 1 in 3 get it. That’s a gap. A dangerous one.What’s Next? Research and Hope
There’s real progress. In 2023, a drug from Wave Life Sciences reduced the toxic huntingtin protein by 38% in early trials. Roche’s tominersen, after a pause, is being tested again with lower doses. These aren’t cures-but they’re steps. The FDA now requires new HD drugs to show at least a 3.5-point improvement on the UHDRS motor scale. That’s a high bar. But it means only real benefits will get approved. Still, even if a gene therapy works tomorrow, it won’t help the 40,000 Americans living with HD right now. For them, the best medicine isn’t in a pill. It’s in a plan.
What You Can Do
If you or someone you love has HD:- Get connected to a Huntington’s Disease Society of America Center of Excellence. They coordinate care. They know the resources.
- Start care planning now-even if symptoms are mild. Write down wishes for care, finances, and end-of-life.
- Find a therapist who understands HD. Depression and anxiety are treatable, even in HD.
- Explore financial aid. Nonprofits like HDSA and the Hereditary Disease Foundation offer grants for therapy, equipment, and respite care.
- Join a support group. You’re not alone. Thousands of families are walking this path.
Questions About Huntington’s Disease
Can you get Huntington’s disease if neither of your parents had it?
No. Huntington’s is inherited in an autosomal dominant pattern, meaning you must inherit the mutated gene from a parent. If neither parent has the gene, you cannot develop HD. However, in rare cases, a new mutation can occur-but this is extremely uncommon, estimated at less than 1 in 10,000 cases.
Is chorea the only symptom of Huntington’s disease?
No. Chorea is the most visible symptom, but HD affects the brain in three major ways: movement, thinking, and mood. Cognitive issues include trouble focusing, planning, and remembering. Psychiatric symptoms like depression, anxiety, irritability, and obsessive behaviors are common-and often appear before chorea. In later stages, people may become rigid, slow, and have trouble swallowing or speaking.
Can genetic testing predict when symptoms will start?
It can give a rough estimate, but not an exact date. The number of CAG repeats in the HTT gene correlates with likely age of onset. For example, 40-50 repeats usually mean symptoms appear between 30 and 55. Over 60 repeats often mean onset before age 20. But lifestyle, environment, and unknown genetic factors mean two people with the same repeat count can develop symptoms years apart.
Why is care planning so important in Huntington’s disease?
Because HD progresses predictably, but care often doesn’t. Without a plan, families scramble during crises-emergency room visits, hospitalizations, unsafe living conditions. Early care planning reduces hospital stays by 32%, cuts suicide risk by 58%, and extends life by over two years. It gives people control over their future when they still can.
Are there any new treatments for Huntington’s disease on the horizon?
Yes. In 2023, Wave Life Sciences reported a drug that reduced toxic huntingtin protein by 38% in early trials. Roche’s tominersen, after being paused, is being tested again with adjusted dosing. Valbenazine was approved in 2023 as a second chorea treatment. These aren’t cures, but they’re the first drugs targeting the root cause. Still, even if gene therapies work, they won’t help the 40,000+ people already living with symptoms-so care planning remains vital.
How can families afford HD care?
HD care is expensive-over $125,000 per year on average. Insurance rarely covers everything. Families can apply for financial aid through HDSA, the Hereditary Disease Foundation, and state Medicaid waivers. Some non-profits offer grants for therapy, home modifications, or respite care. Social workers at HD specialty clinics help navigate these options. Many patients also qualify for disability benefits once diagnosed.
Can children be tested for Huntington’s disease?
Testing children under 18 for adult-onset HD is strongly discouraged by medical guidelines unless symptoms are present. Since there’s no treatment to prevent or delay onset, and the psychological burden is high, experts recommend waiting until the person is an adult and can make an informed decision. Exceptions are made only in rare cases of juvenile HD, where symptoms appear before age 20.
What’s the difference between tetrabenazine and deutetrabenazine?
Both reduce chorea by about 25-30%. Tetrabenazine (Xenazine) is older and cheaper but has a higher risk of depression and sedation. Deutetrabenazine (Austedo) is a modified version that breaks down more slowly in the body, so it’s taken less often and tends to cause fewer mood-related side effects. It’s more expensive but better tolerated by many patients.
Why do some people with HD develop symptoms earlier than others?
The main factor is the number of CAG repeats in the HTT gene. More repeats = earlier onset. Paternal inheritance also plays a role-when passed from father to child, the repeat count often increases by 5-10 units, leading to earlier symptoms. Other factors like lifestyle, stress, and unknown genetic modifiers can influence timing, but the CAG count is the strongest predictor.
Is there a cure for Huntington’s disease?
No cure exists today. Current treatments manage symptoms but don’t stop the disease from progressing. Research into gene-silencing therapies, protein-targeting drugs, and stem cell approaches is active, with promising early results. But even if a cure is found tomorrow, it won’t reverse damage already done. That’s why care planning-helping people live as well as possible for as long as possible-is the most critical tool right now.