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  • Cure VCP Disease, Inc.

Heartbreak to Solace: Finding Solidarity in the Cure VCP Disease Community

by Stacy Murray

In 2003, I was five and a half months pregnant with my second child. My husband and I had just left a routine OB appointment when an excruciating pain gripped my back so intensely that I couldn’t walk. What I initially dismissed as regular pregnancy discomfort soon spiraled into a years-long journey of pain, unknowns and a quest for answers.


I sought answers from specialists in internal medicine, orthopedics, rheumatology, and neurology, with each appointment ending in frustration and disappointment. By 2009, none of the doctors could provide a definitive diagnosis.


During this time, while working at a psychiatrist’s office, my path took an unexpected turn when I struck up a conversation with a patient in a wheelchair. As we exchanged stories, she listened intently to my symptoms and struggles before suggesting I visit a movement disorder clinic. 


I followed her advice and was diagnosed with ataxia, the loss of complete control of bodily movements. Seeking more information and the next steps, I consulted an ataxia specialist at the University of Chicago. The specialist doubted the diagnosis and, suspecting something more complex, ordered more genetic tests.

Finally in 2016, after 13 years of searching and 21 different doctors, I received a diagnosis. My genetic tests revealed a pathogenic variant in the VCP gene.


The years of doctor visits, therapies and hospital stays were marked by pain, uncertainty and fear. I am adopted, so I don't know my family history of the disease. When the diagnosis finally came, it was a mixed blessing—relief at having an answer but heartbreak over the reality of my condition.

Reflecting on my life before and after learning I had VCP disease is hard for me. I had once been independent, enjoying my job, friends and the start of family life with my husband and children. Living with VCP disease brought numerous challenges, particularly with accessibility.

I learned the hard way that ADA compliance doesn’t always equate to true accessibility for people with disabilities. Now reliant on a wheelchair, everyday tasks require meticulous planning around obstacles like stairs, curbs, narrow aisles, and restrooms. I regularly miss important family events and struggle to participate in everyday activities, such as doctor’s visits and eating at my favorite pizza joint.


One particularly humiliating experience occurred during a family visit to Arizona. A restaurant's inaccessible restroom forced me to navigate through a dark, outdoor area where meat was smoked to reach a remote bathroom. Barriers like these are not only inconvenient and exclusionary but also isolating and demoralizing.


The Cure VCP Disease support network has helped normalize these experiences and my life as a VCP disease patient. Becoming part of a community of people who can relate to my challenges has changed my perspective. If you are currently living with a disability, I want you to know that you don’t have to go through it alone. There is strength and hope in our community.


As my journey with VCP disease continues with the support of my family and community, I am learning to find joy in the small, meaningful moments. Now, I spend my days with my dog and beloved husband, who has been my rock through every trial. Though I no longer work or drive, I fill my time with activities that give me a sense of purpose and fulfillment, like baking cookies and mud pies for my two sons and crafting snuggle mats for animals at the local shelter.

I wish there had been an organization like Cure VCP Disease when I was searching for answers to explain my condition. My symptoms include ataxia and parkinsonism, which were initially considered atypical manifestations of VCP disease. Through global education and awareness initiatives, Cure VCP Disease is driving a broader understanding that VCP can affect different people in different ways. This awareness helps patients find answers sooner so they can take control of their health.

I’m proud to be part of a community taking action to advocate for patients like me and fight for a cure. That’s why I’m participating in the Cure VCP Disease I CAN MOVEment fundraiser and pledging to raise $1,000. I invite you to join the movement and help us reach our goal by donating to my team.


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