This Tuesday, I will complete a 9-day medical study at the National Institutes of Health (NIH), part of an effort to better understand CADASIL, a rare, little-known genetic disorder that affects blood flow in the brain and can lead to strokes, dementia, and other serious neurological issues. There is no cure for CADASIL. Treatments are limited, and many people are diagnosed only after suffering irreversible damage.
I was diagnosed in mid-December, not because I had severe symptoms, but because of a fluke incident—a week-long episode of blurry vision in one eye that led me to the emergency room. Thanks to highly committed healthcare providers and neurologists who pushed for genetic testing, I received a diagnosis before experiencing major symptoms—something that rarely happens.
I am privileged to have top-tier health insurance that made early testing possible, but I know that for far too many, this is not the case. Many CADASIL patients go undiagnosed until it’s too late—after suffering strokes, debilitating migraines, dementia, or other life-altering conditions. I believe my father was one of them. He passed away in his early sixties, and though little was known about CADASIL at the time, looking back, it is likely that this gene mutation played a role in his decline.
Science and Research Are Under Threat
When I was invited to participate in this NIH study, I jumped at the opportunity—not just for my own health, but to contribute to critical research that could one day lead to better treatments and, hopefully, a cure. Over the past week, I have:
- Donated over a dozen vials of blood to monitor my health
- Completed a full DNA genome sequencing for research
- Undergone one brain MRI during this visit (my second in three months)
- Participated in an EKG, an eye angiogram, a vascular diagnostic test, a neuro-psych assessment, a skin biopsy, and a nail fold capillaroscopy
Every test, every sample, and every data point I provide could help advance scientific understanding of this devastating disease. But here’s the hard truth: research like this is under attack.
The Trump administration and the Republican Party have aggressively cut funding for science and medical research. Some of the doctors and scientists working on my study have already had other critical research projects—like a study for epilepsy patients—paused or eliminated because NIH lost funding to support patients without health insurance. If these cuts continue, lifesaving research—like the one I am participating in—will be drastically reduced or even eliminated.
Healthcare Is a Human Right
As the daughter of a two-time cancer survivor, I have seen firsthand how science saves lives. My mother survived both breast cancer and cervical cancer years ago. Since her recovery, medical research has led to the development of the HPV vaccine, which has dramatically reduced cervical cancer rates worldwide. In the U.S. alone, cervical cancer cases and deaths have dropped by 65% among vaccinated women in their early 20s since the introduction of the HPV vaccine. This is what happens when science is funded, prioritized, and used for public good.
CADASIL has no cure. But with research, there is hope. Without research, there is none.
None of us are guaranteed tomorrow. But I refuse to sit back while research funding is slashed and healthcare access is stripped away from those who need it most. I will fight like hell—both in my personal life and my professional work—to ensure that everyone has access to the care they deserve.
Science is not political—it is essential. Healthcare is not a privilege—it is a right.
I am hopeful, I am grateful, and I am committed to fighting for a future where healthcare and research are fully funded, accessible, and equitable for all.
Join me. Demand that our leaders protect funding for medical research. Speak out. Advocate. Fight for healthcare justice. Because when science wins, we all win.
#HealthcareIsAHumanRight #FundScience #CADASILAwareness
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