Like Alzheimer’s disease that progressively steals a person’s cognitive abilities, eventually making them an invalid; Huntington’s Disease (HD) is just as debilitating as a genetic mutation in a gene within your DNA attacks and kills brain cells in a progressive robbery of a person’s quality of life.
Around-the-clock care is very likely for those with an onset of HD. Long-term care insurance may be used to pay the cost of care that your other insurance plans leave behind.
Huntington’s Disease (HD) is a hereditary disorder with no cure and is caused by damaged DNA carrying an unstable protein. The mutation is caused by an excess in three of the four nucleobases that are fundamental components of nucleic acids. Nucleic acids are the building blocks of our DNA.
Cytosine, adenine and guanine are main bases, or nucleobases in the nucleic acid of DNA and are fundamental components of nucleic acids. Nucleic acids make up our DNA and code hereditary information. The three are dotted up and down our DNA strands and appear multiple times in a row of DNA. The normal count is 10 to 35 times within the gene. Those with HD have been found to have a higher CAG. People with counts between 35 and 39 may or may not develop symptoms while people with a count of 40 or higher almost always develops this disorder.
Symptoms of the disease can begin as early as two years of age in severe cases and is referred to as juvenile HD, notes Wikipedia. These children inherited over 60 CAG repeats from their parent.
But most often, symptoms begin between 30 and 50 years of age and these people are carryiing CAG repeats numbers over 40. Those inheriting less than 40 repeats may or may not develop any signs or symptoms in their lifetime.
“The number of CAG (the sequence coding for the amino acid glutamine) repeats influences the age of onset of the disease,” notes Wikipedia.
Most people with HD often underestimate the degree of their problems, Wikipedia cautions. But HD is an unpredictable and unpreventable disease which kills brain cells and there is no way to predict the resulting effects of a person’s damaged DNA. Any adverse results could affect any region of your body, therefore any bodily function is at risk.
It was only in 1993, the cause for Huntington’s disease (HD) was isolated within the DNA double helix strand to the huntingtin gene. The job of the huntingtin gene (HTT) is not known but it has been theorized as playing a role in long-term memory storage, according to Wikipedia.
A genetic test was developed by using the huntingtin gene as a marker to determine if someone had Huntington’s disease and an estimation of its onset. Experts estimate that about one out of every 10,000 people have Huntington’s Disease. The mutation that causes Huntington’s involves a series of three DNA building blocks that include cytosine, adenine and guanine, the trio have been coined the CAG count.
These CAG repeats cause the huntingtin gene to form defects which are an indicator of the disease. A defective HTT gene cannot adequately provide instructions for making the huntingtin protein, which although its exact function is unknown, abnormally developed huntintin proteins have been linked to causing Huntington’s Disease.
Unfortunately, HD cannot skip a generation because the genetic makeup of your DNA comes directly from your parents. Therefore, if a parent has HD, there is a 50% chance of passing it to their child since all people carry two copies of the huntingtin gene. The huntintin gene which is responsible for DNA coding. you have some variation in your CAG repeats that pattern in an arrangement that is specific only to you.
Your CAG repeats will not be exactly the same as your parent’s but you will be born with abnormal CAG numbers. Since your CAG repeats will be different from anyone else, the progression of the disease cannot be predicted for you. Also, if you did not receive the abnormal huntingtin gene from your parent with HD, any children you birth are not at risk for inheriting the disease.
Medicare, Medicaid and privately held healthcare insurance will cover some of the cost of care for Huntington’s disease but not all. The remaining costs becomes the responsibility of the individual. This is where long-term care insurance (LTC) kicks in to cover that which your healthcare insurance wouldn’t cover.
Individuals that decide on testing believe the test will enable them to make more informed decisions about the future. Others choose not to take the test. They are able to make peace with the uncertainty, afraid that will not be able to emotional handle the negative, as well as possible losses of insurance and employment. There is no right or wrong decision, but HDSA recommends that you discuss genetic testing with a trained counselor before making a decision to test.
Repeats have been seen as high as 120 and some studies suggest that, the higher the repeat, the earlier the onset. A common perception is that the earlier the symptoms, the faster the progression. However, conclusions are still being debated.
What Does Huntington’s Disease Do?
Movement:
· Involuntary jerking or writhing movements (chorea)
· Involuntary, sustained contraction of muscles (dystonia)
· Muscle rigidity
· Slow, uncoordinated fine movements
· Slow or abnormal eye movements
· Impaired gait, posture and balance
· Difficulty with the physical production of speech
· Difficulty swallowing
Cognitive:
· Difficulty planning, organizing and prioritizing tasks
· Inability to start a task or conversation
· Lack of flexibility, or the tendency to get stuck on a thought, behavior or action (perseveration)
· Lack of impulse control that can result in outbursts, acting without thinking and sexual promiscuity
· Problems with spatial perception that can result in falls, clumsiness or accidents
· Lack of awareness of one’s own behaviors and abilities
· Difficulty focusing on a task for long periods
· Slowness in processing thoughts or “finding” words
· Difficulty in learning new information
Disability Social Security Insurance is available for those with Huntington’s who cannot work and the Genetic Information Non-Discrimination Act (GINA) made it illegal for health insurance companies to deny coverage or to charge a higher rate as well as employers using any genetic information when making employment decisions. But GINA only applies to health insurance.
Will Long-Term Care (LTC) Insurance Help Me?
Many insurance companies are re-designing their underwriting process that can include higher rates and require genetic testing but only if it is recommended by a physician.
As far as life insurance, genetic testing is not always conducted during a life insurance exam though, as of today, there are currently no federal regulations that say you can’t be denied due to a genetic disorder. Life insurance companies can ask for genetic testing when it comes to long term care and life policies.
Once again, as this discussion continues concerning insurance companies using genetic testing, it is imperative to look into opportunities while you are young and healthy. You will be protecting the unexpected in the future especially if genetic traits may indicate cancer, Alzheimer’s and Huntington’s Disease later in your life.
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