An article in Newsweek by a 16 year old who mulls over whether or not to get genetic testing for Huntington's disease which runs in her family. She wonders about still pursuing her dreams if she tests positive..
"On the other hand, I'm scared that I may not cope well with the test results, or lose my motivation for life. The last thing I want to happen is to lose hope. I know that whatever the result of the test, I need to stay focused on school and my goals in life. As long as I channel my energy towards causes for HD I hope to stay on the right track...My parents have taught my sister and me that all of the doubts, the "symptom searching" and the stresses can be successfully managed. They've demonstrated this by empowering themselves with involvement in the HD community. As they take us to Huntington's events, I've seen people go through the growth and adjustment caused by the rollercoaster of HD.
... Testing is a personal and emotional choice. Each individual has his or her own reasons for wanting or not wanting this information. Although the initial result may feel overwhelming, as I've seen, time is a major factor in the coping process--so is an optimistic outlook. There are no guarantees in life, so even with a positive test result, the world, as I know it, will not come to a halt. Embracing life and living it to its fullest potential is a choice, especially with the difficult reality of HD."
I think she described the importance of support by becoming involved in the HD community very well and also describes the considerations involved in any kind of genetic testing. The article discusses family issues in more depth than I quoted and is worth reading, not only for anyone facing genetic testing, but for all of us living in a world where we will face more choices about how to utilize medical knowledge.
2 comments:
If it was me I wouldn't want to know. You cant predict the future anyhow. I know that from having muscular dystrophy because peoples predictions even doctors are sometimes wrong. I liked her article.
As someone who made the choice to be tested; I know that if you don't find out you live each day wondering and thinking each little twitch or slur of speech is a symptom. Further, in the US at least, you need to self advocate for anything beyond basic medical care. By learning your status you can put yourself in a position to plan your "medical" future while you are healthy. If you find out, you will have the chance to make some decisions on how to approach life to best prepare for your future. My bottom line was that I had a lot more to gain by finding my HD status than to lose....none the less none of this is easy!
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