A milestone birthday has me reflecting on life with gratitude

Tomorrow, Feb. 28, I’ll celebrate a milestone that once seemed impossible: my 50th birthday.

This date is deeply meaningful and significant for me. Just a day away from a leap day, it has always been a reminder to me of life’s unpredictability. But there’s another, even deeper correlation: Feb. 28 is also Rare Disease Day this year, and I live with Huntington’s disease (HD).

Reflecting on this momentous 50th birthday, I can’t help but see the interconnectedness between it and my journey with HD. Both are rare. Both have come with challenges. And both have required resilience.

In 2012, after years of misdiagnoses and medical skepticism, I was finally diagnosed with HD. With that diagnosis came grim predictions. Doctors told me that by my 50th birthday, I’d likely be in a nursing home, in diapers, and needing full-time care. At the time, I felt like I’d received a death sentence.

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For much of the next decade, those dire predictions felt like they were becoming a reality. My body struggled against the disease. I was hospitalized repeatedly, each time feeling like my independence and dignity were slipping away. The symptoms of HD — chorea, balance issues, cognitive fog, depression, and more — became overwhelming. I thought my life was over.

But something shifted.

Through sheer determination, unwavering advocacy, and the pursuit of the right medical team, my story took a different turn. I refused to accept that my fate had been sealed. Instead, I sought out doctors, therapists, and specialists who believed in me as a whole person, not just a diagnosis. I built a care team that worked with me, not against me. Slowly, I learned how to reframe my perspective about HD — not as inevitable decline, but as a challenge to navigate with the right tools, support, and mindset.

The results have been nothing short of miraculous. I no longer rely on a cane or walker. I haven’t been hospitalized for anything HD-related since 2019. These are victories that I never take for granted. They are proof that with the right support, advocacy, and self-care, life with a chronic illness can still be full of possibility.

Today, as I stand on the threshold of 50, I am filled with gratitude — not just for the progress I’ve made, but also for every lesson this journey has taught me. I choose to see turning 50 not as a burden, but as an honor. It is an honor to have defied the expectations set for me. It is an honor to have learned how to advocate for myself. It is an honor to still be here, thriving in my own way.

Many people fear getting older, but I embrace it wholeheartedly. Every extra year — every extra moment — is a gift I refuse to take for granted. I get another year to learn, to grow, to inspire, and to live my best life. I get another year to share my story, to encourage others, and to remind those who are struggling that hope is not a myth, it is a choice.

Turning 50 as a woman with HD is more than just a birthday. It is a blessing. A testament to resilience. A celebration of defying the odds. And most importantly, a reminder that life — no matter how unpredictable — can still be beautiful.

So here’s to 50. Here’s to another year of possibility. And here’s to every rare soul who dares to keep fighting.

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.