Should I Get a Huntington’s Tattoo?

Alexus Jones avatar

by Alexus Jones |

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When I was a sophomore in college, I debated going blond. It was January, and every winter, I usually cut or dye my hair. I always need a change of pace during winter. Normally, I go with red or black, and my mom can easily dye my hair. Going blond isn’t as simple, as it requires a lot of bleach. My mom refused to do my hair at home considering how many ways it could go wrong. This meant I had to pay to go to a salon. 

I went to all the salons in my area, and they estimated it would cost between $200-$300 to get my hair to a light blond. On top of that, roots need to be touched up monthly, adding an upkeep cost. This was more than I planned to spend on my hair as a college student. However, I wanted to know how I would look as a blonde. These mutually exclusive desires led to a bit of a dilemma. 

My mom grew frustrated with the back and forth and told me I just needed to make a decision. So I did: I got a tattoo (a completely logical connection at the time). My friend recommended a quote from “Pride and Prejudice” by Jane Austen that says, “There is a stubbornness about me that never can bear to be frightened at the will of others.” It was a change like I wanted, didn’t require monthly upkeep, and was cheaper than bleaching my hair. 

Afterward, I decided each of my tattoos would tell the story of who I was at that moment. That way, even if I changed, I would never regret a tattoo. Following this theme, my second tattoo was an outline of a cat. I have a lot of cat-like behaviors (i.e., deciding when I want attention, thinking the world revolves around me, etc.), and it describes me well. After my second tattoo, I realized I really like line art. (It hurts less when it doesn’t need to be filled in.) 

As most people with tattoos can attest, it’s an addiction. Once you get one, you’re planning the next. I started planning my third in January, about a month after I got my second. My current plan is to get the skeletal structures of the CAG DNA building blocks, the repeat responsible for Huntington’s, on my arm. 

Part of me loves this idea. The tattoo’s scientific aspect really appeals to me, especially because I work in life science consulting. It also fits my themes of line art and telling my story. Huntington’s will always be a part of my life and who I am. The tattoo could also help raise awareness for Huntington’s if I share what it means.

The other part of me is hesitant. For one, I don’t know if I want to think of Huntington’s every time I look at my arm. It could be very draining, but it could also help desensitize me. I don’t know if I want random people asking me about it, either. While the tattoo could raise awareness, would I be exhausted from answering that question?

With this tattoo being almost as permanent as my DNA structure, I want to make sure it’s the one I want. Because I’ve been thinking about it for nine months, my mom believes I would know by now if I didn’t want it. On the bright side, I have to wait to get it due to COVID-19, giving me more time to think.


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.


Jennifer C avatar

Jennifer C

I love this story and can really relate to it from a mother's perspective. It is definitely a difficult and personal decision. My oldest daughter is married. She and her husband loves tattoos and they selects only those that tell and celebrate their life story. She is hesitant to have a tattoo for Huntington's. Her grandfather passed from it, her father and uncle have been confirmed; and she and her sister are at risk. For her it is a reminder of those things. My second daughter has an HD tattoo (the initials HD with a cross) on her wrist where it is very visible. She is not married and sees the tattoo as a conversation starter, enabling her to educate and openly discuss HD and the uncertainty of her future with those she may date, friends, family and many others. It helps her cope with the present, deal with the past and hope for the future. I am happy to say, it opened dialogue with a wonderful man who is accepting of the unknown and will most likely be my second son-in-law. Thank you so much for sharing your story.

Dylan avatar


Did you ever get it? I've not got any tattoos but this seems like a really cool, unique idea.
just read lots of your articles. it has been very helpful to hear about your experience with testing and family, as someone who also tested positive. I'm inspired by your breaking down the stigma with open honesty.


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