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Genetic testing for people with ALS

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Downside: Emotions that may come with genetic testing

The genetic testing process may be overwhelming or confusing at times. You may feel anxious as you wait for your results. Learning about your results may bring up difficult emotions for you and your loved ones, too.

For example, you might feel excited or relieved to get answers about the cause of your ALS. Or, if you don’t get the information you were hoping to learn, you might feel sad or frustrated. If you choose to share genetic testing results with your family members, they may have strong feelings about your results and their own risk of developing ALS.

Some people may choose not to get genetic testing for these or other reasons. No matter what you decide, your ALS care team is here to listen and support your decision. Remember, you get to choose:

  • Whether to have genetic testing
  • What to do with the information you learn from genetic testing
  • Who to share your results with
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