Editor’s note: This column briefly mentions the topic of suicide. Please find resources for help at the end of the column.
Unlike many rare genetic disorders, Huntington’s disease doesn’t have an approved treatment regimen that will halt, stop, or slow disease progression. However, it is relatively simple to undergo a genetic test that tells you if you have the genetic mutation.
If you have it, you will start developing symptoms one day. Considering that it’s mostly an adult-onset disorder, would you want to know that you will develop this progressive, neurological disease if there isn’t anything you can do about it?
As I mentioned in a previous column titled, “Mental Preparedness Is Crucial Ahead of Genetic Testing,” an observational study found that 90% of the estimated 200,000 people at risk for Huntington’s in the U.S. choose not to take a genetic test, largely because there aren’t available treatment options.
Because Huntington’s is an autosomal dominant disorder, one of the hardest parts for many at-risk individuals is watching a parent slowly lose their life. The individual then has to look in the mirror and wonder if it will happen to them, too. The Huntington’s Disease Youth Organization created a video that shows how young people are impacted by living in a family with Huntington’s.
As part of the 10% that chose to find out our genetic status, I always felt the sooner I knew, the sooner I could prepare my mind for the future. Other people I have gotten to know through the Huntington’s community also seem to be a part of the 10%.
This leads me to wonder: If you are more involved in the Huntington’s community, are you more likely to seek out genetic testing? Involvement could include volunteering for an advocacy group, participating in local events, or fundraising.
I am not sure a study has the answer today, but I believe the more active someone is in the community, the more educated they are about the disease. The more educated someone is about the disease, the more likely they are to want to know their genetic status, I suspect.
Regardless of a person’s decision to get tested, their reaction to their results is unique. I’ve seen people respond in a variety of ways, both firsthand and secondhand. Some are told they have the genetic mutation, and they adopt a healthier and more satisfying lifestyle. Unfortunately, others go as far as taking their own life. I’ve also seen a spectrum of emotions and reactions from those who test negative for Huntington’s.
With a promising group of treatments either undergoing human clinical trials or preparing to enter them, the genetic testing outlook for the 90% may soon shift.
The question for the future is: At what point will the 90% of untested individuals feel confident that there is something they can do to halt disease progression? Will it be the opportunity to participate in a clinical trial for a new treatment? Will it be the opportunity to take a medication approved by the U.S. Food and Drug Administration? Time will tell.
I also hope these treatments will prevent people from taking their lives after learning their genetic status. Treatments can’t come soon enough. Until then, we will look for ways to help and support those who need it!
When would you want to know your genetic status? Please share your thoughts in the comments below.
If you or anyone you know is experiencing suicidal thoughts or needs someone to talk to, please call the National Suicide Prevention Lifeline at 1-800-273-8255 or visit suicidepreventionlifeline.org.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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