Why I Got Tested for Huntington’s at 22 Years Old

Alexus Jones avatar

by Alexus Jones |

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gene mutation and HD prognosis

As you may have read in a previous column, I decided to get tested for Huntington’s at 22 years old.

For me, it was a no-brainer. I wanted to get tested because I can’t handle unknowns. They vex me. I have obsessive-compulsive disorder, so my brain holds onto things it doesn’t have an answer to and constantly reminds me of them. That is what happened with Huntington’s. Every day, my status was at least a passing question: Did I have the gene?

The answer, until last fall, would have provided additional information about my mother’s status as a Huntington’s carrier. I chose not to be tested because I didn’t want to make that decision for her. But the question of my status, and what it would mean for my future, weighed on me. However, this past spring, my mother’s status was no longer holding me back, and I decided to get tested. 

From the moment I scheduled my appointment, I was challenged by friends, family, and even medical professionals to defend my decision. People didn’t seem to understand why someone my age would want to know this information. In their mind, ignorance of my status as a carrier was the same thing as not having Huntington’s, and receiving the results would bring the disease into existence. But that simply wasn’t the case.

Many people were worried about how the news would affect me and wondered if it was the best time to get tested. Granted, I did have a lot going on in my life at the time, including finishing my degree, moving, and starting a new job. However, I knew that Huntington’s would be on my mind throughout the entire process, whether it was dealing with the results or obsessing about the chances.

Most people did not think my need to know outweighed the perceived consequences of the test. I had to come up with various, logical reasons as to why I wanted to know. For example, by knowing my status as a carrier, I could have a better sense of what kind of money to save and in what type of account. But that was by no means my main reason. Ultimately, not knowing would always be worse than knowing. If I knew one way or another, at least I would be able to go a day without thinking about Huntington’s.

I got the results that I have the gene in April, but I don’t regret my decision to be tested. The decision is a very personal one. I am glad I didn’t let other people’s opinions influence my own.


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 Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.


Anna avatar


I recently tested positive for HD and I couldn't agree more with everything in this article, even down to thinking about bank accounts and pensions. I put off being tested for a while, even though I wanted to, just because I knew my Mum would be angry about it and question my decision. I ended up getting tested without telling any of my family and I don't regret doing so, even after my result. I was however surprised at how the news affected me. I barely think about it for the most part, but it has definitely changed the way I think about things, most notably relationships. I find myself despairing, thinking I could never be with anyone in a serious relationship because if I cared about them that much,I wouldn't want to put the pressure on them of them having to care for me when I am no longer able to care for myself. However, I do not regret getting tested against the will of my friends and family. I think you need to be selfish in these circumstances and do whatever you want to do. They're your genes.

Alexus Jones avatar

Alexus Jones

Hi Anna! It's sad that it is such a common occurrence for people to project their own fears on this decision. I agree that in this case, you have to do what's right for you.

I do want to say that I have been very upfront in all of my relationships about Huntington's, and it's not been bad on that end. There is also so much hope with treatments coming out, that soon that won't be a concern.

Stacy avatar


I think the saddest, most difficult to understand, is the medical practitioners reluctance to test here in Arizona. My ex had Huntington's, his brother also, a few cousins (who have also passed on from it or related illnesses), and likely a few more siblings that refused to be tested. Yet in this state of AZ you have to go to a psyche doctor, they have the ultimate say as to if you can be tested.

Alexus Jones avatar

Alexus Jones

I can't imagine having to have that extra step in order to know my own genome. It just seems so patronizing.

Brenda Pierce Steel avatar

Brenda Pierce Steel

Prayers daily
For people with Huntington’s and their family. When it hits home it is on your mind everyday. Hope for a cure is also my prayer

Alexus Jones avatar

Alexus Jones

Thank you, I am hopeful with the amount of research being done that it will happen soon.

Farnaz avatar


I read this article today
I'm from Iran
Mr grandmother died because of Huntington,my mother is 42 she doesn't have any symptoms yet
But I'm worried about my future..
I'm a medical student,22 years old
I want to be tested to think clearly about future...If i was positive i want to leave my University and marry to my love.. and leave the remaining time
But I scare .... I scare that I can't handle the results

Do you think the cure will be available in 2or 3 years??😥



I have lost many family members to HD and now see some of my cousins displaying signs. My Mother passed away from cancer in 2019 and never shown signs of HD, but always was never tested. Her two other siblings had the gene. One passed away from the disease and one is experiencing advanced signs. I want to get tested so my children can make the decision on having children. MY worry is that I will not be able to get health insurance if I leave my current job or if we have a new insurance company. Is this a concern?

Alexus Jones avatar

Alexus Jones

That is an understandable concern, but thankfully under the ACA, insurance companies cannot discriminate based off pre-existing conditions (https://www.hhs.gov/healthcare/about-the-aca/pre-existing-conditions/index.html)

There is a concern around life insurance, that it may not be possible for you to get if you do test positive.


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