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Huntington's Neuro Note

In my Neuro class we have been learning about Huntington's Disease. It is a terrible disease that attacks the mind and body, rendering the individual powerless. HD is an autosomal dominant disorder, which means that an individual only needs one copy of the gene to have the disease. This also means that there is a 50/50 chance of a person getting the gene, assuming that only one parent has the gene. If you have the gene, then there is a 100% chance that you will become symptomatic at some point during your life. After being diagnosed, individuals typically live 10-15 years.

Since we started learning about HD in class I wondered if there were any TED talks about the subject. So I googled TED talks about Huntington's Disease and was given a couple of options. One of the talks I watched is titled Facing Death Full of Life. Danielle Valenti is talking about the story of her mother, who had HD. Danielle's Mom had been hiding the fact that she had HD from her to protect her from knowing, seeing, and experiencing the trauma of having a loved one with HD. Danielle's Mom ended up in a nursing home designed for those with HD. Her mother did not want to spend her final years in a nursing home, so she decided to end her own life by refusing food. Danielle says that allowing her Mom to make that final choice and ending her life on her own terms, was one of the hardest things she had to do, but she knew why her Mom did it. Danielle is an only child and her Mom did not want her spending her time driving up to visit her and "wasting" her healthy years visiting her. Danielle's Mom was afraid that she had passed the gene on to her daughter. Danielle then goes on to talk about genetic testing and how she chose to have the test done. Danielle learned that she is positive for the Huntington's gene, meaning she will, at some point, become symptomatic. She goes on to say that she went through periods of depression, wondering if every movement she made was the first sign. She eventually realized that that was no way to live. She decided to live life to the fullest, because the next day is not promised and the next day she could wake up with symptoms.

During her talk, Danielle said that most people who are "at risk" for developing HD, 90%, never get the test. I found that number to be incredibly high. Everyone has their own reason for being tested or not being tested. Some couldn't live with the thought that they will die from a disease that currently has no cure. Some prefer the ignorance is bliss point of view. While I personally am not in the situation of having to decide to be genetically tested for HD, I have a slightly different point of view. Say one of my parents was HD positive and I decided to take the test right this minute. If I am HD negative, then I have nothing to worry about. If I am HD positive, then yes, I have to live knowing that I will become symptomatic and might die of that disease, but there is hope. Hope for a cure. Hope for my potential future children. Even though I am not currently in a relationship where thinking about children is on the table, if I was and we decided that we wanted children there are in vitro ways of ensuring that my children would not get the disease. How awesome is that?!? I could tell my children that while I may not live to be 103, I ensured that HD stopped with me so they would never have to worry about becoming symptomatic. Personally, I think that it would be a great legacy to leave.


Here is the link to the TED talk, Facing Death Full of Life
https://www.youtube.com/watch?v=6JRwCdmewl0



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