It is estimated that about 30,000 people in the United States, or 1 in every 10,000 individuals, have Huntington’s disease. Around 16% of Huntington’s disease cases are diagnosed in children and young adults. If you are diagnosed with Huntington’s disease, you may be wondering how long it will take to get better.
This article will explain what you can expect during Huntington’s disease life expectancy and how you can manage your condition better. It also provides you with information on treatments, age at death, and possible preventions. Despite the slow progression of the disease, it can still affect the patients for years. Therefore, it’s crucial to make sure you’re prepared for your future by researching and seeking proper care services.
Duration
Variations in Huntington’s disease life expectancy, gradual development, and typical lifespan are to be expected. On average, 10 to 30 years pass between the onset of symptoms and the last stage of the disease, i.e., death. The Huntington’s disease life expectancy after diagnosis for a child is about 10 years.
The duration of Huntington’s disease varies considerably but is often cut short by age. Late-onset and juvenile-onset patients have shorter disease durations than patients with adult-onset HD. However, the disease duration may be shortened by other factors as well. The age at which symptoms begin to appear also influences the total duration of the disease. Although late-onset HD is often considered fatal, it is less common than early-onset HD.
In an unborn fetus, doctors can diagnose the disease using amniocentesis or chorionic villus samples. In adults, the disease develops rapidly, but most people with HD are still able to live a relatively independent lifestyle, even with the help of a caregiver.
DNA trinucleotide (triplet) repeat expansion of 40 CAG or more in the gene Huntingtin is the primary causative factor in contracting Huntington’s disease (HTT, OMIM 613004). It causes a progressive functional decline of the brain and is accompanied by psychiatric and motor symptoms.
As the disease progresses, the individual’s ability to manage domestic responsibilities and personal care declines. They may no longer be able to swallow or move. This may result in substantial weight loss and severe communication problems. This also means that life expectancy and quality of life now appear to be limited. This stage can be emotionally and psychologically draining, especially for family members and friends.
Causes
People with Huntington’s disease are genetically predisposed to the disorder. The Huntington’s disease gene is located on chromosome 4, one of the twenty-three chromosomes in the human body. When this gene is mutated, it causes a protein called HTT to multiply too rapidly. Because this protein is toxic, it accumulates in the brain and damages brain cells. The disease affects approximately 2.71 per 100,000 people worldwide.
The rate of progression of Huntington’s disease varies from person to person. However, some people can live for more than 30 years after diagnosis. Middle-aged patients can even live normal life to an extent. However, people with the disease are likely to develop complications such as infections or falls. Ultimately, Huntington’s disease will shorten the life expectancy of the affected person. But in the meantime, the patient must remain active and maintain a positive mental attitude.
While Huntington’s disease does not have a lasting cure, some experts are confident that gene therapy may provide a permanent solution. Researchers believe that they can prevent Huntington’s disease by using CRISPR-Cas9 techniques.
These techniques cut and paste DNA, enabling the disease-fighting protein to reside in the brain without the risk of the disease spreading. They found that mice, given this genetic modification, showed significant improvements in their condition after three weeks. Moreover, nerve cells began to heal, suggesting that CRISPR-Cas9 techniques can help. However, more research is needed before the techniques can be widely applied to humans.
Treatments
While there are no known cures for Huntington’s disease, proper treatment can help patients live the best life possible. Psychological counseling can help patients cope with the cognitive decline and behavioral challenges that are common in this condition. Early-stage patients may have trouble remembering or thinking, and some may have difficulty chewing. They may also need help in feeding themselves.
Treatments for HD may involve a combination of traditional medication and complementary treatments. HD patients are prescribed medications such as dopamine-depleting medicines (reserpine and tetrabenazine) and dopamine-receptor antagonists for treatment (e.g., neuroleptics).
Some patients find supportive care helpful, such as social support, for such initiatives can ease their symptoms. A physical therapist can help patients exercise safely and effectively. Patients may also try complementary and alternative therapies to reduce their anxiety. They should seek treatment for the symptoms of HD as quickly as possible.
Genetic testing can help diagnose Huntington’s disease earlier. The disease is inherited as an autosomal dominant trait, meaning that there is a 50% possibility of a patient’s offspring inheriting the condition. Genetic testing may be necessary for a patient’s insurance coverage or to avoid discrimination. Genetic testing can also help determine if they should have children. People who have the disease will likely not want to pass on the defective gene to the next generation.
Physical therapy can help patients overcome problems with speech and swallowing. Physical therapy helps patients maintain mobility, while speech therapy can help them communicate more clearly. Psychotherapy, in addition, can help patients cope with their condition and learn how to use assistive devices. Many of these therapies are complementary and can help patients live a better life.
Age at Death
The age at death of individuals with HD is higher than that of people without the disorder. It is similar to that of nonhereditary Parkinson’s disease and Alzheimer’s disease, but the median time from diagnosis to death is longer in HD patients. Regardless of age, diagnosis is important because HD has no cure. However, there are several ways to improve the chances of survival in patients with HD.
As the disease progresses, care requirements increase. To help families cope, local hospices and palliative care teams offer support and guidance. Specialist advisers can help with both practical and emotional issues. Families can also find comfort by joining one of the many Huntington’s disease support groups in their area. Support groups offer invaluable resources for those caring for a person with HD and their families. So many families have found solace in sharing their experiences.
Family History
Despite the prevalence of Huntington’s disease, the exact cause is unknown. Huntington’s is a hereditary disorder, and people with a family history of the condition are 50% more likely to develop the disease than those with no such history. However, this condition is more common in people of European descent. While there is currently no cure for HD, it is possible to treat the symptoms and manage the disease.
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People with a family history of Huntington’s disease should get genetic testing to determine if they carry the gene. While a positive test result indicates that a parent will develop the disease, it is important to know that a carrier of the gene can still have children without passing on the disease. Therefore, it is important to discuss genetic testing with a genetic counselor to avoid negative results and make informed decisions.
Conclusion
Huntington’s disease can be a difficult condition for a person to live with. The early stages of the disease may be very mild, but over time, the symptoms can become more severe, it’s important to seek advice from your doctor early on.
People with a family history of Huntington’s disease are at a high risk of developing the condition. Because of this, patients should get a thorough physical examination. Huntington’s disease can affect relationships and daily activities, and a timely diagnosis will help in seeking proper medication and care.
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