Genetic Testing Is Like a GPS Tool for People with Huntington’s
Bear with me as I make an analogy. It’ll make sense in a moment.
My wife, Jill, now sees genetic testing as the equivalent of a GPS. When you need to find out what illnesses run in your family, all you have to do is turn it on. Once it’s on, it gives you direction in life, and if used correctly, gets you where you need to go by helping you make some difficult decisions. Jill wishes that everyone had access to genetic testing as much as we have access to GPS.
In the past, whenever Jill spoke about genetic testing, she outright refused to consider it. She watched her father lose his job because of Huntington’s and was terrified of the same thing happening to her. She said that if she did have it, our daughter, Alexus, would have a 50 percent chance of having it as well. Most of all, she didn’t want to know how she was going to die.
Jill has a completely different view of genetic testing today. She believes that decisions about health and future should not be made from a place of fear. According to her, the fear of genetic testing was worse than the fear of having Huntington’s.
Jill’s fear of getting tested was based on well thought out facts, or so she thought. Her biggest fear was getting fired, but Jill’s father was wrongfully terminated and could have sued. He was protected by the Americans with Disabilities Act (ADA), a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including work.
The ADA ensures that people with disabilities have the same rights and opportunities as everyone else. Title I of the ADA requires employers to provide reasonable accommodations to qualified applicants or employees. A reasonable accommodation is any modification or adjustment to a job or work environment that will enable an applicant or employee with a disability to participate in the application process or perform essential job functions.
Now that Jill knows that she is gene-positive, her fear is gone. She realizes that she is better off with a diagnosis, as she is protected by the ADA and no longer has to keep her Huntington’s a secret.
Jill didn’t want to give our daughter something to worry about if she did test positive, but she admits that she was anxious about Huntington’s all the time, to the point where it became debilitating. Our daughter had the same fears. As odd as it sounds, they both say their minds are much more at peace now that they know.
Because she knows that Huntington’s is probably going to contribute to her death, her diagnosis helps her plan how she is going to live. For example, she knows that stress exacerbates her symptoms. She also knows that exercise strengthens the muscles that Huntington’s will eventually affect.
In other words, Jill tries to enjoy the things she wants to do today instead of putting them off until tomorrow, because she may not be able to later on. Now that she sees genetic testing as a kind of GPS, she hopes other people will see it as a guide to help them navigate the future.
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