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Genetics
Pop Culture and Huntington’s Disease: When Life Imitates Art
Personal Perspective: How "General Hospital" inspired me to face my genetic fate.
Posted April 14, 2025 Reviewed by Devon Frye
Like many children of the 80s, I can remember my mom watching soap operas when I was little. Actually, it was just one in particular: "General Hospital." She would have it on while she folded clothes or did the ironing. I liked sitting with her as she followed the (sometimes absurd) journeys of the characters, even though most of the adult-themed plotlines were lost on me.
Then, in 1993, when I was 11, it happened: Lucky Spencer, son of the power couple Luke and Laura, walked into Kelly’s diner for the first time. Something about the young Jonathan Jackson made my prepubescent heart start beating a little faster. Suddenly, I was very interested in my mom’s show.
I watched whenever I could for a couple of years, always hoping for an episode involving my beloved Lucky. But as a teenager, I had non-fictional boys to contend with, and I slowly lost interest in the good citizens of Port Charles.
A Link to the Past
For the next couple of decades, the show was completely off my radar. But one night in 2017, thanks to a case of raging insomnia, I happened across a rerun of a recent episode in the middle of the night. The nostalgia was potent as I discovered that so many of the characters I remembered as a kid were still on the show.
There was sentimental value for me, too, because it made me think of my mom. She had died unexpectedly in a car accident in 2009, and the show made me feel connected to my memories of her. So I kept watching, and I got hooked back in pretty easily. As a therapist and mother of small children, I was greatly in need of some self-care in the form of lighthearted entertainment, and this was just what the doctor ordered (wink).
Then, as fate would have it, in 2021, they did a storyline that proved of particular interest to me: one of the young, brilliant doctors of General Hospital, Britt Westbourne (portrayed by the lovely Kelly Thiebaud), discovers that she has Huntington’s disease.
Art Imitates Life
Ugh, Huntington’s disease. I was honestly a little angry at first. This was supposed to be my break from reality, and instead, it was forcing me to think about one of the more difficult truths about myself: I had a family history of Huntington’s.
More specifically, my maternal grandmother died of Huntington’s at age 55. But because she died before I was born, I never witnessed it. In fact, I knew very little about it, since the disease was never discussed in my family. I wasn’t even fully aware that it was genetic until I went to college and researched it myself.
At that time, my mom wasn’t exhibiting any symptoms, and as a young, healthy woman, it seemed easy enough to convince myself that it was a non-threat. It felt at least two generations removed from me, and therefore, the possibility of me having it seemed remote.
That mindset dominated the next couple of decades. But as I watched Britt Westbourne go through the process of being diagnosed, I couldn’t help but feel like my mom’s spirit was somehow drawing on our shared love of the show to invite me to take a closer look at this unpleasant piece of my ancestry.
So I began to re-examine some things. Since HD is passed from parent to child, my mom could have inherited it from her mom. Though she never experienced any of the telltale motor symptoms before her death (also at age 55), she was never tested for it in her lifetime. That meant her genetic status was uncertain, which in turn meant that mine was too. Mathematically, I couldn’t rule it out.
I also began to revisit my mom’s symptoms. The absence of motor symptoms made it seem like she was in the clear. But she did have depression and some of the erratic behavior that can be common in the prodromal phase of HD.
If I was being honest, so did I: I had been battling depression for years, and the very insomnia that led me to watching GH again could very well have been because of subtle neurological changes that were already happening. The realization that I might actually be gene-positive suddenly seemed impossible to avoid.
Life Imitates Art
Indeed, art was imitating life: my life. More accurately, art reflected something about my life, which inspired me to go deeper on my own journey.
Because my mom chose not to face her genetic inheritance, I had no model of how to proceed. Instead, I took my cues from a fictional character. It was Britt Westbourne’s story that spurred me to action, and I made the decision to deal with my fate head-on as I chose to be tested.
And so, to my mom: For many years, I chose the same path you did and remained in denial. It was tempting to believe that this disease had left our lineage with my grandmother’s passing. But that was not true. You carried it without knowing it, and you passed it on to me. It remained hidden for a generation. I am confronting it now in hopes that the more people who choose to do the same, the more light will be shed on the disease itself, and the more science will continue to advance toward a cure.
To the writers and actors of "General Hospital": Thank you for choosing to focus on this rare disease and for doing so in a way that honored those of us who are actually living with it. It directly impacted my life’s trajectory and inspired me to know my own history and advocate on behalf of my children, who are also at risk. This is the power of art.
And to Lucky Spencer (who still makes my heart skip a beat): Without you, I never would have connected to a soap opera in the first place. To the utter delight of my inner child, your character returned to the show just last year, which I will take as a sign. If your name holds truth, may invoking it now bring good fortune to those of us who carry this burden and dare to hope that we might be able to put it down in our lifetimes, if only for the sake of the next generation. Love always, Your Biggest Fan.
