Soania Mathur, MD, wasn’t worried 25 years ago when she noticed an intermittent tremor in her right pinky finger.
As a new physician building a family medicine practice, she was too busy to give it much thought. But the tremor became more constant, and her husband noticed. He urged her to visit a neurologist, and after a series of clinical tests, Dr. Mathur received a shocking diagnosis: young-onset Parkinson’s disease.
She was 27 at the time and expecting her first daughter. “What was initially a nuisance and easily ignored turned out to be a lifetime diagnosis of what is currently an incurable, relentlessly progressive neurological disease,” she said.
Over time, the tremor progressed from her right hand to her right leg, and then to her left side. “I slowly lost control of my body,” Dr. Mathur said.
Her symptoms have included painful muscle spasms, stiffness, restless nights, and constipation. “This is not just a movement disorder but a whole-body disease with a ton of non-motor symptoms,” Dr. Mathur said. “This disease affects every aspect of my life.”
Twelve years after her diagnosis, she gave up her medical career and shifted her focus to advocacy. More than 10 million people are living with Parkinson’s disease worldwide. Dr. Mathur is concerned about global challenges, including care limitations, stigma, and a lack of social support. “I want to give a voice to the voiceless,” she said.
In 2024, Dr. Mathur joined the Steering Committee for the Accelerating Medicines Partnership® for Parkinson’s Disease and Related Disorders, a program managed by the FNIH. In this role, she provides crucial input to the project’s design and execution from her unique vantage point of someone living with the disease.
Dr. Mathur is hopeful about the team’s work to better differentiate Parkinson’s from related neurodegenerative disorders, enabling earlier and accurate diagnosis, more timely interventions, and better outcomes.
Her advocacy efforts also include serving as co-chair for the Patient Council of the Michael J. Fox Foundation for Parkinson’s Research. In addition, she is a co-founder of PD Avengers, a patient-led organization that is pushing for a cure. She also has a website, unshakeablemd.com, where she shares blogs and other information.
“What continues to inspire me are all the exceptional stories and strength that I witness in this remarkable community,” Dr. Mathur said. One of her friends participated in more than 350 research studies over 17 years. He tragically passed away before he could benefit from any of the advancements he helped support. Other friends with Parkinson’s disease have earned doctorates and run marathons.
This remarkable community has given Dr. Mathur a new sense of optimism and hope. “I may not have control over this diagnosis, but how I face the challenges that this disease brings is mine to determine,” she said. “I’m not defined by my disease. The other roles I play in my life – wife, mother, daughter, friend – are much more important than that of patient.”
Dr. Mathur’s remarkable story has been covered by The Washington Post and Brain & Life.