Title: “Navigating Genetic Disease Testing: A Personal Story”—Seth Rotberg
Date: January 2018
Citation: Talks, T. (2018, March 06). "Navigating Genetic Disease Testing: A Personal Story" | Seth Rotberg | TEDxNatick. Retrieved August 11, 2019, from https://www.youtube.com/watch?v=5_O5TfMVqD8
Description of the material/experience and what I did to further his/her learning:
Seth describes the day he was clinically diagnosed with HD. He describes how HD can resemble ALS, Alzheimers, Parkinson’s all at once. He also states how patients with HD have a 10 to 20 year lifespan after first symptoms show. Seth also describes watching his mother go through HD with wobbly/uncoordinated gait, slurred speech, etc. While Seth was in college he was contemplating if he wants to get tested for HD. He described the process as "mentally draining" on whether or not he would test positive for HD. He did test positive, but he was reluctant to tell his family and friends.
He joined a few HD organizations and people thought he was raising awareness because his mom has the disease, while all along he knew deep down he was positive. During his senior year of college, his friend Jake passed away unexpectedly in an accident. This shifted Seth's perspective on life and his friend's death changed his mind about keeping his HD a secret. One quote his friend Jake always said was, “Live as if you are to die tomorrow, and learn as if you are to live forever." He ended up losing another friend from a version of HD at the age of 26. Then Seth decided he was going to tell his dad and sister that he tested positive for HD. He vividly recalls telling his dad about his positive test. While his dad was upset with his positive test, he tells him they are making great progress in a cure for the disease. Telling his sister was different because his sister was upset he kept it a secret for 2 years. Later in the Ted Talk, Seth tells how his mom passed away from a 17 year battle with HD. He gave three pieces of advice to anyone looking to get genetically tested for a life altering disease. They are:
1. Work with a genetic counselor/neurologist in the field
2. Talk with your family/friends first
3. Things get tough. Each day is a new day!
Explanation of why I chose that as part of this assignment
I chose this because Ted Talks are always dynamic and interesting. Also, this was a personal story of someone battling HD. My sister-in-law recently was positively tested for HD and this Ted Talk paralleled her story almost identically. Watching it was almost like a movie that you have watched a thousand times but you still watch it again because it is so impactful. Since HD has such an impact on my immediate family I feel that I will always be drawn to learning more and more about the disease and how to help these individuals.
Reflection of what was learned/gained by the student in relation to this course content, including a recommendation for others to access the material/experience too
From this assignment I learned there are more individuals battling the fight to go through with genetic testing for HD. I know firsthand my sister-in-law and my brother were in a mental tug of war on whether or not to be genetically tested; however, knowing they want to have children one day motivated them to go through with the testing to hopefully prevent passing down the HD gene. I also learned that how every family dynamic is different and some individuals handle the genetic testing differently. Seth's account of learning you tested positive for a disease that will ultimately kill you was so eye opening. It just changes your life in the blink of an eye. All in all, this Ted Talk helped open my eyes to a different point of view of someone battling HD.
Below is a link to a webpage where you can find out additional information and also donate to help find a cure for hereditary diseases.
http://www.hdfoundation.org
Below is a link to a webpage where you can find out additional information and also donate to help find a cure for hereditary diseases.
http://www.hdfoundation.org
A photo/link to a document/website/etc.
This is a link to the Huntington’s Disease Society of America. There are many resources on this website to support/advocate for HD and hopefully find a cure one day!
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