I have been
really interested in learning more about Huntington’s disease since learning
about it in class and reading the book “Inside the O’Briens.” I was particularly interested in hearing more
about the effects of Huntington’s Disease on family members. I decided to watch a TED Talk called Facing
Death Full of Life. In the video,
Danielle Valenti talks about her experience with her mother who died from
Huntington’s Disease. She explains how the disease often presents as a
combination of Parkinson’s, Alzheimer’s, and ALS. It is a rather rare disease affecting only about
30,000 people. Valenti’s
mother kept the disease a secret for a while to protect her. She says that in the past HD was often
referred to as the “Devil’s Disease” since it takes control of your body and
causes uncontrollable movements. She describes
watching Huntington’s take away her mom’s ability to do the most basic
tasks. Her mom eventually went to a
Huntington’s Disease nursing home in Vermont.
However, her mom did not want to spend the rest of her life living in a nursing
home. She decided to end her life by
refusing food. Although hard, Valenti
decided to listen to her and allow her mom to have her last choice. She refused to eat for 67 days before she
died at the age of 55. At this time
Valenti was 29 and without the role of caretaker, she could no longer ignore
the fact that she could have the gene for Huntington’s. What is so interesting about the disease to
me is the genetic factor. As she
explained, each child with a parent with Huntington’s has a 50% chance of inheriting
the gene. If the gene is inherited,
there is a 100% chance that the person will become symptomatic at some point in
their life. Although no cure or
treatment, a genetic test can determine if they have the gene. One fact Valenti said that surprised me is
that there are currently about 200,000 people considered at risk for Huntington’s. However, only a small percentage will choose
to go through with genetic testing since there is nothing that can be done. Valenti decided to go through with testing
because she felt that she couldn’t completely mourn her mom’s death until she
knew. After arriving at the neurologist’s
office, she found out that she will be the next generation of Huntington’s
Disease. She doesn’t know when she will
become symptomatic. Although her future
looks scary, she tries to take it day by day.
I didn't know much about Huntington’s disease previously. What I found so unique about this disease in
particular is the genetic component and how this affects family members. With every disease, the family members of the
individual with the disease are affected as well. Too often, I think we forget to consider the
effects of the diseases on family members.
Family members are often caretakers and are also faced with many
challenges and have many emotions. For
Valenti, she was an only child, which also had a huge influence. With Huntington’s Disease, there is an added
effect on family members because they too could be faced with the same disease
they are watching their loved one suffer from.
Although not every generation in the family may be faced with the
disease, likely more than one person could have HD. The genetic testing is very interesting to
me. It is interesting how people decide whether
or not they want to know if they have the gene.
I could see why someone would be opposed to the test since there is no
treatment for the disease. Hopefully a
treatment for HD is in the near future. Danielle
Valenti has a great insight on being a caretaker to someone with Huntington's as well as
also being positive for the gene. My biggest takeaway is to remember to be
sensitive to clients as well as family members when you are treating clients with Huntington’s
Disease.
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