Huntington's disease is considered to be such a serious disease resulting in disability that it is included in SSA's list of Compassionate Allowance conditions.
Huntington's disease (HD) is a hereditary neurological disease that causes profound and relentless progressive physical, cognitive and emotional deterioration, which leads to very high levels of disability and premature death. At present, no cure and no effective treatments exist for HD.
If your symptoms primarily affect the way you move, you can likely still work. “We do have medications that are able to control movements,” says Dr. Oguh. “I have patients who have mild chorea and are still able to maintain their job, with some adjustments to the job environment.”
The eye movements can happen early in the disease. Physical changes may include slurred speech and problems with swallowing, eating, speaking, and especially walking. People with HD may lose weight because of problems with feeding, swallowing, choking, and chest infections.
Nine patients have died, and seven have been lost to follow up. The range of disease duration was between 2 and 17 years, the oldest living to age 91.
Pneumonia and heart disease are the two leading causes of death for people with HD.
People can start to show the symptoms of Huntington's disease at almost any age. Most will develop problems between the ages of 30 and 50. The condition gradually gets worse for around 10-25 years, until the person dies.
This disease often affects a person's ability to plan, make decisions, and process complex topics. But patients usually retain past memories, and are able to recognize people, objects, letters, numbers, and colors. They are often able to continue carrying out jobs that they have previously been doing for many years.
Huntington's disease (HD) is an autosomal dominant neurodegenerative disorder that usually starts in mid-adult life. The clinical disease progresses to death over an average of 20 years.
Foods to avoid for Huntington's disease
These foods include: Raw fruits. Stringy vegetables. Tough, crusty breads.
If you hold a driving licence and have symptoms caused by Huntington's disease, you're legally required to contact the DVLA. The DVLA will ask you for details of your doctor to seek further information. Many people are still allowed to drive, but this will be reviewed regularly.
“Because some of the cognitive and physical impairments develop early, you want to start doing appropriate therapies as soon as possible. Aerobic exercise paired with resistance training is going to be the best to help slow down the impairments caused by the disease.”
o How many Australians have Huntington's disease? The best available published evidence of relevance to Australia suggests a prevalence rate of 8.4 per 100,000 people. This indicates that with a current population of 25.7 million people in Australia1, there is currently around 2,160 people with a diagnosis of HD.
They may lack inhibition, and do or say things that one would normally find embarrassing. People with Huntington's may also be less able to control their emotions, possibly leading to outbursts of screaming, swearing, slamming doors, hitting walls, or the like. Patterns of behavior can change as the disease progresses.
There have been reports that juvenile onset Huntington's chorea is almost always inherited from the father, and that late-onset Huntington's chorea is inherited more often from the mother than from the father.
Huntington's disease impairs the functioning of the brain, which can result in apathy, trouble organizing, impulsivity, irritability and anger, unawareness, disinhibition, preservation, and other psychiatric symptoms. These emotional and behavioral symptoms can further complicate the caregiver's role.
Aerobic exercise has been shown to improve cardiovascular fitness and motor function in people with Huntington's. Aerobic exercise requires continuous movement of large muscles to increase the heart rate. This can include activities such as stationary cycling, walking at a brisk pace or uphill, and swimming.
In Huntington's advanced stage, patients are totally dependent on others for their care. They can't walk or communicate with their loved ones, although they are generally able to understand what is being said and who everyone is.
Stage IV: (9 - 21 years from illness onset)
Requires major assistance in financial affairs, domestic responsibilities, and most activities of daily living. For instance, comprehension of the nature and purpose of procedures may be intact, but major assistance is required to act on them.
Hospice referrals for Huntington's can be challenging because it's difficult to predict decline. Common end-of-life signals include significant weight loss, difficulty swallowing or breathing, recurrent aspiration pneumonia, and uncontrolled pain.
People with Huntington's disease usually die within 15 to 20 years of their diagnosis. The most common causes of death are infections (such as pneumonia) and injuries related to falls.
Although not directly related to HD, stress is nevertheless related to the progression of the disease because it adds to the neurodegeneration that is already taking place. Chronic stress can alter nerve cells, brain structure, and brain function.
The survival of Huntington's disease (HD) patients is reported to be 15–20 years. However, most studies on the survival of HD have been conducted in patients without genetic confirmation with the possible inclusion of non-HD patients, and all studies have been conducted in Western countries.