With her medical career under way and her first child on the way, Soania Mathur, MD, was busy making all of her dreams come true. Then, life took a dramatic turn. At age 27, Mathur was diagnosed with young onset Parkinsonís disease. She shares her journey with PD in a new article for EverydayHealth.com.
Mathur, a member of The Michael J. Fox Foundationís Patient Council, recalls the early days after her diagnosis. She describes the emotional and physical toll the disease took on her, as she was trying to care for her young children, stay connected to family and friends, and keep up with her demanding career as a family physician.
As both a health care professional and patient, Mathur has a unique perspective on the challenges of Parkinsonís. She has become an outspoken advocate for the community, educating patients and their loved ones on how to live well with the disease and participate in finding a cure. She and her husband, Arun, are both registered members of Fox Trial Finder, MJFFís online tool for connecting Parkinsonís patients and those without the disease with studies in their community. She calls their participation in clinical trials ďa deeply satisfying experience.Ē
Mathur also shares:
"From talking to patients over the years, I know there are a number of reasons we donít sufficiently participate in research; a lack of interest is not one of them. Part of the problem is logistics ó who can afford more time away from family and household responsibilities? Not to mention the hassle of securing transportation, time off from work, and so forth.
Those arenít the only issues. Most patients and caregivers have trouble finding studies in their own community. I faced the same issue, which led me to talk to my Parkinsonís doctor about studies he knew of. Then I discovered several tools that can help connect willing volunteers with the studies that need them.Ē