Worst disease known to man.
This is how many describe Huntington's disease (HD). HD is a degenerative disease of the brain. Most describe it as a combo of Parkinson's disease, Alzheimer's, and ALS. HD does not rob the mind or the body of function, but both through its progression. Danielle Valenti gave a Tedtalk on her experience with HD. Her mother had been diagnosed with HD and never told her. It was not until two years before she passed that Danielle found out of the diagnosis. She watched her mother struggle with the disease and then eventually elect to end her life by not eating. Her mother passed 67 days after her last bite. It was not till Danielle had be removed from the "caretaker" phase of life, did she consider that she may have HD. HD has a 50/50 chance of being passed on the offspring. Currently there is no cure, but there is a test to see if someone has the genetic marker for it. Danielle and her friends and family debated if she should get the test. All the test does is tells you if you have HD. There is no cure for HD, only management of symptoms. Did Danielle want to live her life in fear of HD or did she want to live life without knowing? Danielle choose to find out. She had the genetic marker for HD.
I think Danielle's dilemma brings up a good question, do you test for HD if there are no symptoms? The test is very helpful in verifying a prognosis. It gives answers to the doctors, so that they know how to treat. But what if you do not have any symptoms yet? The test recognizes the gene marker whether there are symptoms are not. Does knowing that you have HD change the course of your life? HD can show up at any time. Most cases usually start after 30 years of age. I think knowing would limit someones effective and happy life. I would constantly be thinking, "is today the day?" I think the test is beneficial for the diagnosis when there are symptoms, but not for knowing if HD can develop.
What did Danielle do after her diagnosis? She choose to live life, looking to the happiness that life brings and not the negativity. These are words we can all live by.
I think Danielle's dilemma brings up a good question, do you test for HD if there are no symptoms? The test is very helpful in verifying a prognosis. It gives answers to the doctors, so that they know how to treat. But what if you do not have any symptoms yet? The test recognizes the gene marker whether there are symptoms are not. Does knowing that you have HD change the course of your life? HD can show up at any time. Most cases usually start after 30 years of age. I think knowing would limit someones effective and happy life. I would constantly be thinking, "is today the day?" I think the test is beneficial for the diagnosis when there are symptoms, but not for knowing if HD can develop.
What did Danielle do after her diagnosis? She choose to live life, looking to the happiness that life brings and not the negativity. These are words we can all live by.
Retrieved from: https://www.youtube.com/watch?v=6JRwCdmewl0
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