A Family Tragedy Caused Me to Reevaluate My Huntington’s Status

Alexus Jones avatar

by Alexus Jones |

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At around 1 a.m. on Nov. 1, 2019, my aunt was pronounced dead. She had been waiting with her son in their car outside their house for a storm to abate when a tree fell on the car. Fortunately, my cousin was unharmed. 

My aunt had awoken that morning perfectly fine, and by the next day, she was gone.

While we weren’t close, her death has affected me. I am concerned about my dad. I was unable to travel to support him because of illness and the high costs. Though we didn’t share a close bond, it’s hard for me to wrap my head around my aunt’s sudden death.

This tragic accident increases my awareness of the fragility of life. I can’t predict the future, so what is the point of living in fear of what’s to come? While I believe in making smart decisions for the future, such as saving money and taking care of my health, I shouldn’t let worry about distant possibilities keep me from doing what I want to do.

I have the Huntington’s gene, but that doesn’t mean that I can’t have a wonderful dating life. I cannot predict what will happen years from now, and dating is hard enough without concerns about the future dictating my choices. I won’t let my gene-positive status or fears that I might start exhibiting symptoms in a few years or 30 stop me from applying for an exciting job.

I’m only 22, but I’ve known many people who have died long before they should. For that reason among others, I am living so that regardless of when my time comes, at my funeral, they will say that I lived fully.

While I try to be in bed at 10 p.m. on weekdays, my current boyfriend had thought that I was much more adventurous than I am, because I have a try-anything personality. I realize that an experimental person who impulsively adopts a kitten or collects tattoos isn’t for everyone.

What I’m trying to say is that we can pretend that we’re living in a world where Huntington’s doesn’t exist, even if it’s just for one decision. I know that world is the one we wish we lived in now.


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.


Bob Murphy avatar

Bob Murphy

Beyond relationships, what do you feel about future children and the 50% risk that each of them will have the HD gene?

Alexus Jones avatar

Alexus Jones

Thank you for taking the time to read my article. I actually have another article talking about just this (https://huntingtonsdiseasenews.com/2019/08/02/having-children-personal-decision-comments/ ). Huntington's does affect my life in those kinds of ways, but I don't know that I wouldn't make the same choice without the gene.

Jens avatar


Hey Alexus, I have enjoyed reading several of your columns! My name is Jennifer, I am 31 and I watched my grandmother slowly decline from being diagnosed with HD in her 60's and living to be early 80's. I have had genetic testing performed before but not specifically for HD. I have considered it but don't know that I am ready to make a decision quite yet. I really appreciate your words and I resonate with your message.

Alexus Jones avatar

Alexus Jones

Hi Jennifer!
I am really glad you have enjoyed reading my columns. It is a big decision for a lot of people whether or not to know. You still have time before you would find out naturally. Personally, I don't think I could have made it to my 40s or 50s without testing; I would have gotten so paranoid trying to identify symptoms. But, for some, ignorance is actually bliss. It's nice to be able to not open that box and still have the hope your results are negative. Whatever you chose, make sure that it's right for you.


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