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The Impact of Huntington's Disease on Personal and Family Life

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Huntington’s is a disease in the brain, Huntington’s disease affects the Neurological and nervous system. Huntington’s disease is passed on from generation to generation through an altered gene from your parents. Huntington’s causes the death of brain cells in parts of the brain causing slow loss of cognitive ability, physical and emotional functions. Huntington’s disease is a serious and debilitating disease for which there is currently no cure. The most noticeable symptom of Huntington’s disease is jerky movements that is also known as chorea, Chorea can start mildly that gradually increases. Someone suffering from Huntington’s disease can also struggle with swallowing, concentration and speech as a result of this.

The cause of Huntington’s disease is an altered gene, this gene has been passed down to a child from their parents, although this gene is passed down at birth Huntington’s disease condition is not noticeable right away. The symptoms of Huntington’s disease normally first show themselves when the patient is in their middle years. Huntington’s disease is a slow, progressive disease that can affect patients differently. Someone suffering from Huntington’s disease might live for fifteen to twenty-five years after the first signs appeared. Diagnosing Huntington’s disease is based on the family history of the disease, genetic testing, and assessment of neurological, emotional and physical symptoms.

There are a few symptoms of Huntington’s disease, these symptoms are split up between three different areas that are classified as emotional, physical and cognitive symptoms. Physical symptoms include mild twitching in fingers and toes, the habit of knocking objects over, decreased coordination and having trouble walking, jerky movements in the legs and arms, having trouble swallowing and speaking. Cognitive symptoms which include loss of memory (short term), having trouble concentrating and making or sticking to plans. Emotional symptoms include behaviour issues, mood swings, aggression and depression which is experienced by about 1/3 of the people suffering from Huntington’s disease.

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There is currently no cure or treatment to stop or reverse the affects of Huntington’s disease known.

The way they diagnose Huntington’s Disease is by testing close members of your family for a history of Huntington’s disease or the Huntington’s gene, by running genetic testing to locate the Huntington’s gene, as well as assessments of neurological, emotional and physical symptoms. The gene of Huntington’s disease can be passed on from biological parents with Huntington’s or parents carrying the Huntington’s gene having a child, that child then has a fifty percent chance of getting the gene from their parents and developing the disease. Patients who can possibly have the gene can take a gene test to see if they have the Huntington’s gene. To have the test for Huntington’s you are required to be at least 18 years of age. Deciding if you would like to have the test to identify the gene or not is a difficult decision that requires a lot of thought. A lot of organizations offer counselling to help people who have Huntington’s disease and their family, carers, and friends to cope with the genetic result.

Huntington’s disease has a lot of impacts on both the patient and their carers, family, and friends. Huntington’s disease can have an impact on the ability of the patient to perform their ADL’s, a person with Huntington’s disease may seem more careless. For example, they may not clean the house correctly or may fail to maintain the usual standards of personal hygiene due to their symptoms or as a result of their mental state. Patients might be impacted by disorders affecting movement that are commonly linked with Huntington’s disease that includes both involuntary and voluntary movement issues and impairments in voluntary movements, involuntary movements like Involuntary writhing or jerky actions, issues with muscles contracture or muscle rigidity which can also be called dystonia, not normal or slow eye movements ,impaired posture, gait, balance and difficulty with the physical production of speech or swallowing. These can make doing everyday activity hard to complete without help. Patients can also have cognitive disorders as a result of their Huntington’s including having trouble organizing, focusing or prioritizing tasks, decreased flexibility or repeatedly getting stuck on a thought, action or behaviour, not being able to control impulse that can result in outbursts in anger or behaviour issues, acting without thinking about consequences or sexual promiscuity, lack of awareness of their own behaviours or ability, difficulty or slowness in processing thoughts or getting the appropriate words and difficulty learning new information. Huntington’s patients also can have psychiatric disorders like depression. This is not simply a response to being diagnosed with Huntington’s disease. But instead depression looks to take place because of brain injury and subsequent changes in the function of the brain because of the effects of Huntington’s disease. Signs and symptoms may include some of the following; Feeling sad, not wanting to be social and withdrawing from social activities, feeling irritable and agitated, feeling tired and fatigued and feeling like you have no energy, suicidal thoughts of death, dying. Other psychiatric disorders might include: Having OCD (Obsessive compulsive disorder) which is a condition that is diagnosed by repetitive behaviours or actions. Mania which might cause elevated moods, impulsive behaviour and inflated self-esteem and over activity. Bipolar disorder which is a condition that effects an alternating mental state of depression, mania and as well as the above symptoms might include weight loss, which is common for people suffering with Huntington’s disease especially when the disease is progressing.

The needs of both a patient suffering from Huntington’s as well as family and carers vary, one of the most common needs for people going through Huntington’s themselves or someone experiencing someone else going through Huntington’s is the need for Counselling and support to deal with the sudden and often confronting diagnosis. Other needs might include Information and education about the disease, Practical help within home support or accommodation/ respite. Ongoing support for carers and family, holiday and volunteer/activity programs or just assessment and referral help. Help can be found by contacting your local GP as well as local services to help with psychological and other symptoms. Getting referrals from your doctor to talk to councillors regarding your concerns or through various state/national organizations.

References

  1. What Is Huntington’s Disease? – Huntingtons. (2019). Retrieved 3 November 2019, from https://huntingtonsqld.org.au/huntingtons-disease/what-is-hd
  2. Huntington’s Disease – Brain Foundation. (2019). Retrieved 3 November 2019, from https://brainfoundation.org.au/disorders/huntingtons-disease/
  3. Huntington’s disease. (2019). Retrieved 3 November 2019, from https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/huntingtons-disease
  4. Huntington’s disease – Symptoms and causes. (2019). Retrieved 3 November 2019, from https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/symptoms-causes/syc-20356117
  5. http://www.hdsa.org/
  6. http://www.ninds.nih.gov/
  7. http://www.huntington-study-group.org/
  8. http://www.hdfoundation.org/
  9. https://huntingtonsqld.org.au/huntingtons-disease/what-is-hd
  10. https://brainfoundation.org.au/disorders/huntingtons-disease/
  11. https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/huntingtons-disease
  12. https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/symptoms-causes/syc-20356117

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The Impact of Huntington’s Disease on Personal and Family Life. (2022, August 25). Edubirdie. Retrieved November 29, 2022, from https://edubirdie.com/examples/the-impact-of-huntingtons-disease-on-personal-and-family-life/
“The Impact of Huntington’s Disease on Personal and Family Life.” Edubirdie, 25 Aug. 2022, edubirdie.com/examples/the-impact-of-huntingtons-disease-on-personal-and-family-life/
The Impact of Huntington’s Disease on Personal and Family Life. [online]. Available at: <https://edubirdie.com/examples/the-impact-of-huntingtons-disease-on-personal-and-family-life/> [Accessed 29 Nov. 2022].
The Impact of Huntington’s Disease on Personal and Family Life [Internet]. Edubirdie. 2022 Aug 25 [cited 2022 Nov 29]. Available from: https://edubirdie.com/examples/the-impact-of-huntingtons-disease-on-personal-and-family-life/
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