What is the life expectancy for people with Huntington's disease?

The life expectancy for individuals with Huntington's disease varies based on the form of the disease. For the most common form, adult-onset Huntington's disease, individuals typically live about 15 to 20 years after the onset of initial signs and symptoms [1]. The less common juvenile form, which begins in childhood or adolescence, tends to progress more rapidly, with affected individuals typically living 10 to 15 years after symptom onset [1].

Impact of Age at Symptom Onset

The age at which Huntington's disease symptoms begin is a key factor in determining the course of the disease. Adult-onset Huntington's disease typically manifests in the thirties or forties [1]. Initial symptoms begin with irritability, depression, small involuntary movements, poor coordination, and difficulty learning new information or making decisions [1]. As the disease progresses, involuntary movements become more pronounced, and individuals may experience difficulty walking, speaking, and swallowing [1].

As for the juvenile form of Huntington's disease, it is rare and affects children and adolescents [2]. In addition to movement problems and mental and emotional changes, additional signs may include slowness of movement, clumsiness, frequent falling, rigidity, slurred speech, and drooling [1]. School performance also declines with weakened intellectual and reasoning abilities, and seizures may occur in 30% to 50% of children affected by this condition [1].

Neurological Changes and Their Impact

Huntington's disease is a genetic disorder that causes the slow deterioration and death of nerve cells in parts of the brain [2]. The disease affects the areas of the brain that control voluntary movement [2]. This damage occurs due to a genetic mutation that leads to the production of an excessive amount of a neurotransmitter called glutamate, which results in the death of nerve cells in the basal ganglia [3]. These brain changes are what lead to the motor, cognitive, and psychiatric symptoms that characterize the disease [1].

Symptom Management and Improving Quality of Life

Although there is currently no cure to stop or reverse the progression of Huntington's disease, some symptoms can be treated [2]. Medications used to treat symptoms of chorea (involuntary movements) include tetrabenazine, deutetrabenazine, and valbenazine, which affect brain signals that control body movement [2]. Antipsychotic medications, such as risperidone and olanzapine, may help calm chorea movements and treat psychiatric symptoms such as severe irritability or unusual thoughts [2]. Medications can also be used to treat depression and anxiety [2].

Building a multidisciplinary healthcare team is crucial for managing Huntington's disease, as it can affect multiple parts of the body and requires care from doctors with different areas of expertise [1]. You can learn more about the symptoms, diagnosis, and management of Huntington's disease by visiting Huntington's Disease: Symptoms, Diagnosis, and Managing Life with the Disease (Arabic).

Ongoing Care and Medical Follow-up

Given the progressive nature of Huntington's disease, regular medical follow-up is necessary. Patients and their families should work closely with the healthcare team to adjust the treatment plan as symptoms evolve. The care team usually includes neurologists, mental health professionals, genetic counselors, and speech and language therapists [2]. This coordinated care can help improve the patient's quality of life and mitigate the impact of symptoms on daily activities.

Medical references

• Huntington disease
• Huntington's Disease
• Brain Basics: The Life and Death of a Neuron