Susan's Story

WHY AM I DIZZY?

Susan’s Story: Finding Answers, Relief, and Hope in the Face of a Rare Neurological Disorder

In 2005, Susan made a bold life change. After decades in the fast-paced advertising world of New York, she retired and moved to Charlottesville, Virginia, to pursue her true passion—acting. Within three years, she had landed seven roles in local theater productions and was thriving onstage. But just as she was embracing this new chapter, her world began to spin—literally.

Susan began experiencing unexplained dizziness that quickly disrupted her ability to perform. Walking on and off the stage in the dark became impossible, and she was forced to give up the theater she loved. Determined to find out what was wrong, she embarked on a frustrating medical odyssey. First, she saw her primary care doctor. Then several ophthalmologists, because moving her eyes seemed to worsen the dizziness. Next came an ear specialist, and finally a neurologist. However, despite a battery of tests, no one could provide her with a clear diagnosis.

For three years, Susan was treated for chronic Lyme disease—another misdiagnosis. She endured countless medications that left her sicker and dizzier than before. The turning point came when she fell and broke her hip. Fed up and desperate for answers, she decided to travel to Johns Hopkins in Maryland. “When all else fails, go to the best,” she said.

There, after a thorough three-hour evaluation, neurologist Dr. Amir Kheradmand finally gave her the answer she had been seeking: a diagnosis of CANVAS—Cerebellar Ataxia, Neuropathy, and Vestibular Areflexia Syndrome. It was a relief to put a name to her symptoms finally, but also a blow—CANVAS is a progressive neurological condition with no known cure.

Still, Dr. Kheradmand wanted to track her condition annually for his ongoing research. Around that time, Susan met another person with CANVAS. That patient used a rollator for mobility and experienced frequent nausea, but was taking a medication called 4-aminopyridine, obtained from a compounding pharmacy. Susan began taking the same medication and noticed improvement.

Unfortunately, her condition continued to progress over the next eight years. She suffered multiple falls that resulted in serious injuries—fractures to her femur, neck, and pelvis. Each incident brought new challenges: slurred speech, vertigo, and tiny, nearly unreadable handwriting. Eventually, she switched to a stronger version of the medication called Dalfampridine (brand name Ampyra), recommended by the Johns Hopkins pharmacy.

Dalfampridine helped—but came with a staggering cost: over $1,000 per month, and her insurance didn’t cover it. That’s when Susan discovered GoodRx, a website offering coupons for discounted prescription drugs. She now pays around $90 for a 90-day supply. Still, the uncertainty remains—each time she fills her prescription, she wonders if the discount will still be available.

Despite the progression of her disease, Susan has never used a rollator. She remains active in her community and has even written three novels. And now, she sees a brighter horizon thanks to the efforts of Mark Cuban and the Mark Cuban Cost Plus Drug Company. The company offers Dalfampridine at a dramatically reduced price—just a fraction of what she once paid—without the need for insurance or coupons.

“I am so relieved and grateful to hear about Mark Cuban’s Cost Plus discounted medication program,” Susan said. “It ensures that I won’t suddenly be faced with a medication cost I cannot manage. And it will help so many others receive the medical support they need to live a better life.”

Susan’s story is one of resilience, resourcefulness, and hope. It’s also a powerful reminder of the difference affordable access to medication can make—not just in surviving a chronic illness, but in continuing to live with purpose and joy.