Grapevine Team(Huntington’s Disease Stages – Huntington’s Disease Society of America, 2019)
Writer: Melody Khoo (Xiang Hui Khoo)
Editor: Seungheon Han
According to a study on PubMed, in the United States, Huntington’s disease (HD) has caused over 240,000 deaths in total between 1999 and 2020 (Saeed et al.). So, what exactly is this deadly disease?
Understanding Huntington’s Disease
Huntington’s disease is an inherited, neurodegenerative disease that causes psychological and emotional distress in patients (“Huntington’s Disease: What It Is, Symptoms & Treatment”). It is caused by a genetic mutation of the HTT gene, which makes a protein called huntingtin. This protein is responsible for normal development before birth and protecting neurons from self-destruction (“HTT Gene: MedlinePlus Genetics”). As a result of the gene mutation, the DNA is unable to properly produce huntingtin, leading to its abnormal shapes and enabling the destruction of neurons. The destruction of these neurons occurs in the region of the brain that regulates body movement (basal ganglia) and the area that regulates thinking, decision making and memory (cortex), thus resulting in a decrease in cognitive functions (“Huntington’s Disease: What It Is, Symptoms & Treatment”).
Effects and Implications
The effects of the genetic mutation can be shown in the physical and psychological symptoms of HD, which include: chorea (involuntary jerking and twitching in the face, limbs, and torso), loss of coordination, trouble walking, difficulty swallowing and slurred speech. Psychological symptoms include: memory loss, problems in making decisions and multitasking, depression and mood swings (“Huntington’s Disease: What It Is, Symptoms & Treatment”).
HD is also a progressive disease, and though the process varies, this progression can be categorised into 3 stages: early, middle, and end, with each stage impacting daily life differently. In the early stages, symptoms are mild, with occasional involuntary movements and some trouble with complex thinking and mood swings. But overall, daily life remains unaffected. In the middle stage, things become physically and mentally challenging, where tasks such as driving, working, doing household chores, balancing, eating, and speaking become very difficult; however, personal care and bathing remain possible. Finally, in the end stages, daily tasks become almost impossible to perform independently, requiring constant monitoring and assistance (“Huntington’s Disease: What It Is, Symptoms & Treatment”).
It is important to note that the disease itself isn’t fatal. Still, people die from its complications, for example, falling. There is a median survival range of 15-18 years after the symptoms begin (Lovering), where for some, symptoms show around adolescence (early onset), but for most, they show after the age of 30 (“Huntington’s Disease: What It Is, Symptoms & Treatment”).
Treatment or Cure?
Unfortunately, HD is incurable. As of now, there are some treatments available to those with this disease to alleviate the symptoms and help patients, such as therapy (physical, occupational, speech), medications to help manage chorea, and antidepressants or antipsychotics to help with the mental symptoms (“Huntington’s Disease: What It Is, Symptoms & Treatment”). However, scientists continue to conduct clinical trials in search of a better treatment for this illness. Many thought that it would be impossible until a gene company called uniQure announced on September 24 2025, that through a clinical study with scientists from University College London (UCL), they had found a way to slow down HD via a one-time brain infusion (Gallagher).
This gene therapy treatment, called AMT-130, is guided by an MRI. Surgeons operate on the patient’s brain and insert an engineered virus, containing a genetic microRNA made to reduce the production of huntingtin. This enters directly into the regions of the brain that are heavily affected by HD, which are the caudate and putamen regions. Early results of this treatment seem promising. A 3-year-long clinical trial led by Professors Ed Wild and Sarah Tabrizi showed a correlation between a higher dosage and slower deterioration of neurons (Brissel). Moreover, according to BBC News, there was an average 75% slowing of the disease (Gallagher). However, it is essential to note that since this treatment is relatively new, the data currently available on the treatment is limited. As of now, the treatment is aimed at slowing the rate of HD’s deterioration, and not to cure it.
| Cure | To completely eliminate an illness |
(“Cambridge Dictionary | English Dictionary, Translations & Thesaurus”)
These limitations do not diminish the fact that this is a revolutionary breakthrough in taking a step toward improving the quality of life for those who have this illness.
Help and Support
So how can we help? Given HD’s serious impacts, it is imperative to spread more awareness. This is so that more people can gain earlier medical treatment if they have it, as well as create an inclusive and encouraging community for those who have this illness. You can help by sharing accurate educational facts on social media, donating to organisations such as Huntington’s Disease Youth Organisation (HDYO), which provides support and resources for young families impacted by this illness, or supporting organisations that focus on Huntington’s Disease.
To learn more, be sure to visit websites from organisations such as the Huntington’s Disease Society of America (HDSA) and the National Institute of Neurological Disorders and Stroke (NINDS).
Works Cited
Brissel, Bryce. “A New Treatment for Huntington’s Disease Is Genuinely Promising – but Here’s Why We Still Need Caution.” UNSW Sites, 2025, www.unsw.edu.au/newsroom/news/2025/09/a-new-treatment-for-huntingtons-disease-is-genuinely-promising-but-heres-why-we-still-need-caution. Accessed 13 Nov. 2025.
“Cambridge Dictionary | English Dictionary, Translations & Thesaurus.” @CambridgeWords, 12 Nov. 2025, dictionary.cambridge.org/#google_vignette. Accessed 13 Nov. 2025.
Gallagher, James. “Huntington’s Disease Successfully Treated for First Time.” Bbc.com, BBC News, 24 Sept. 2025, www.bbc.com/news/articles/cevz13xkxpro. Accessed 13 Nov. 2025.
“Grizzly Bear (Ursus Arctos Horribilis) | U.S. Fish & Wildlife Service.” FWS.gov, 2021, www.fws.gov/species/grizzly-bear-ursus-arctos-horribilis. Accessed 16 Nov. 2025.
“HTT Gene: MedlinePlus Genetics.” Medlineplus.gov, 2017, medlineplus.gov/genetics/gene/htt/#:~:text=The%20HTT%20gene%20provides%20instructions,35%20times%20within%20the%20gene. Accessed 13 Nov. 2025.
“Huntington’s Disease Stages – Huntington’s Disease Society of America.” Huntington’s Disease Society of America – Family Is Everything, 12 Mar. 2019, hdsa.org/what-is-hd/huntingtons-disease-stages/. Accessed 21 Jan. 2026.
“Huntington’s Disease: What It Is, Symptoms & Treatment.” Cleveland Clinic, 6 Sept. 2023, my.clevelandclinic.org/health/diseases/14369-huntingtons-disease. Accessed 13 Nov. 2025.
Lovering, Cathy. “What Is the Life Expectancy for Someone with Huntington’s Disease?” Healthline, Healthline Media, 16 Dec. 2022, www.healthline.com/health/huntingtons-disease-life-expectancy#:~:text=There%20is%20no%20cure%20for,Society%20of%20America%20(HDSA). Accessed 13 Nov. 2025.
Saeed, Humza, et al. “Mortality Trends and Disparities in Adults with Huntington’s Disease in the United States.” Journal of Huntington’s Disease, vol. 13, no. 4, 8 Oct. 2024, pp. 491–500, pubmed.ncbi.nlm.nih.gov/39973386/, https://doi.org/10.1177/18796397241287399. Accessed 13 Nov. 2025.
