BEGIN ARTICLE PREVIEW:
As I briefly touched on in my previous column, “Opportunities for a Better Genetic Testing Process,” the testing process in the Huntington’s disease community is a bit like the Wild West.
Depending on your location, there are so many variables that make going through testing way more stressful than it needs to be. Unfortunately, these variables can endanger the future mental and emotional health of individuals going through this monumental life experience.
One variable you can control is requesting a genetic counselor (GC) to guide you through the process. This will make a world of difference from start to finish.
According to the National Society of Genetic Counselors (NSGC), “genetic counselors are professionals who have specialized education in genetics and counseling to provide personalized help patients may need as they make decisions about their genetic health.” This means they can talk to you before, during, or after your genetic testing process in hopes of guiding you through with education, support, and connection.
I have seen many unfortunate examples in the private Facebook Huntington’s disease groups lately where group members go through testing without a genetic counselor and receive results with no explanation.
These group members then turn to other group members for answers, which is always a cluster of opinions and thoughts — some of which are accurate, and many of which are inaccurate. Nobody posts inaccurate information on purpose, but there is a general lack of genetic education across the Huntington’s community.
At a high level, many …
END ARTICLE PREVIEW