Jenna Cotromano was diagnosed with Huntington’s disease at 18 after a sudden health crisis revealed her genetic risk

Feeling unsupported after her diagnosis, she turned to social media to raise awareness and connect with others affected

Her viral TikTok sparked conversations about Huntington’s disease and highlighted the challenges faced by patients and caregivers

Jenna Cotromano thought she was stepping into one of the most exciting chapters of her life.

The Upstate New York teenager was preparing for all the milestones that came with senior year of high school: prom, graduation and the future she had always imagined for herself. At 18, she felt invincible.

Then, seemingly out of nowhere, everything changed.

After suddenly landing in the hospital with unexplained health issues, Cotromano and her family began searching for answers — a journey that ultimately uncovered a devastating truth tied to a side of her family she barely knew.

Jenna Cotromano filming a podcast.Jenna CotromanoAs doctors worked to determine what was happening, Cotromano’s mother reached out to her estranged father, who revealed that he was gene-positive for Huntington’s disease and that Cotromano was also at risk.

Huntington’s disease, often referred to as HD, is a hereditary neurodegenerative disorder that progressively affects a person’s mood, memory, motor function. But at the time, Cotromano says she knew almost nothing about it.

After the initial medical emergency settled, Cotromano, now 25, and her mother traveled to what she describes as a world-renowned hospital in search of answers, both about her gene status and what Huntington’s disease would actually mean for her future.

Unfortunately, she says the experience left her feeling even more alone. According to Cotromano, the doctor overseeing her testing was not fully versed in the severity of Huntington’s disease and lacked the bedside manner needed to deliver news about an incurable diagnosis.

“When I left my last appointment, all I knew was that I was positive,” she recalls to PEOPLE exclusively. “I was given no resources, no insight, no support.”

“Like many people in the community, I spend most days ‘symptom searching,’ ” she explains. “Wondering if every time I trip or misspeak, if it is the first signs of HD.”

Jenna Cotromano with her husband.Jenna Cotromano

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According to the Mayo Clinic, symptoms of Huntington’s disease can include involuntary jerking or writhing movements, muscle rigidity or contracture, slowed or unusual eye movements, difficulty walking or maintaining balance, and trouble with speech or swallowing.

Although Cotromano says she is not currently symptomatic, Huntington’s disease still shapes her day-to-day life. She describes living with “crippling depression” and says the fear of what lies ahead weighs heavily on her every day.

Feeling isolated after her diagnosis, Cotromano eventually turned to social media to advocate for others facing the same fears she once did at 18 years old.

“When I got diagnosed, I felt so lost,” she says. “I had no knowledge of what this disease was or who I could talk to about it and have them truly understand. I took to social media to advocate for 18-year-old me and do my best to ensure no other person feels as lost as I did.”

“I think people resonated with it because I told them the truth: I am going to die,” she says. “I put a face to the disease and a face to a death.”

Since going viral, Cotromano says she has been overwhelmed by the number of strangers reaching out to learn more about Huntington’s disease or ask for support navigating their own journeys. She says the response has reinforced why she continues to speak publicly about the disease.

“It has been so surreal seeing so many people talking about HD at once,” she says. “Being able to connect people with resources is exactly why I started speaking out.”

Still, Cotromano says Huntington’s disease impacts far more than just the person diagnosed.

“Many people in our community have been caregivers since they were young,” she explains. “Children raising parents. Siblings caring for one another.”

Because she is estranged from the side of her family affected by Huntington’s disease, Cotromano says she is the only person in her immediate household who will eventually become sick — a reality that has deeply shaped her relationships and conversations about the future.

“No mother wants to talk end-of-life care with their daughter, especially at 25,” she says.

Jenna Cotromano with her husband.Jenna CotromanoShe adds that she was upfront with her now-husband about her diagnosis from the very beginning of their relationship.

“I told my husband before our first date that if he stuck around, he was eventually going to have to be on my care team,” she says. “I do not want to be involved with someone who is not willing to do that for me. It is a waste of the time I have left.”

Despite the uncertainty surrounding her future, Cotromano says there is still immense joy within the Huntington’s disease community — something she hopes people outside the community can better understand.

“We are not just existing,” she says. “We live while we can and refuse to let HD take us before our time.”