Meet Virginia, VCP Disease Patient
Updated: Aug 29
Hello, my name is Virginia. I was diagnosed with the VCP gene mutation in early 2017, right after I turned 57. My symptoms started at age 30, shortly after getting chicken pox. I never felt strong again after that. My symptoms were limited to cramping in my hands, arms, torso, and legs for many years. I became weaker over time. I chalked it up to the effects of the chicken pox virus in my system.
In the 90s, and at age 30, my neurologist correctly predicted I would be diagnosed with a still undiscovered genetic problem. He said my EMGs and nerve conduction studies reflected "very jumpy muscles, "unlike ALS." He sent me on my way with meds to curb the cramping and some advice I would never forget. He said it was more likely that I would die of natural causes than whatever was ailing me.
I pressed him for a diagnosis and a guarantee that I did not have ALS. He, point blank, asked me why I needed to know. I was shocked at his seemingly calloused inquiry, but he then asked me what I would do differently if I knew how long I had to live. I told him I would travel... maybe to Italy. He looked me in my eyes and said very deliberately, "Well then, travel to Italy." I took it to heart, and from then on, I live every day the best way I can.
Between 30 and 46 years of age, I took the slow road to my education. As a single parent of three, I was forced to work two jobs. I could only take two classes at a time. I earned an associate's degree in Liberal Studies, then an associate's degree in Paralegal Studies, and finally, a bachelor's degree in Marketing.
One of my side jobs was selling PartyLite candles and decor. When I was 48 years old, PartyLite awarded me a Caribbean cruise. I went to the Bahamas and Cozumel on their dime! When I was 49, I earned the Cancun trip, but it was canceled due to the Swine flu (Partylite awarded us cash instead). And when I was 50, I was awarded a Mediterranean cruise to Spain, France, and Italy! (Barcelona, Nice, Sardinia, and Sicily.) Another consultant and I extended our trip, spent several days in Paris, Rome, Florence, and Cinque Terre, and I briefly zipped through Milan. It was an excellent taste of Italy. It took me twenty years, but I finally did it... and I went again at age 56.
By the time I was 52, I was tripping and falling and dropping things---including my PartyLite display products. For that reason, and because the recession had kicked my butt, I decided to retire my PartyLite business.
Having an inherited disease was the last thing on my mind because nobody in my family exhibited symptoms like mine. 2012 proved to be pivotal. I was 52 years old, and after two years of stomach issues and other health concerns, I was diagnosed with a swollen parathyroid gland and had it removed. I had to take calcium while the glands settled. When I took calcium, I had difficulty breathing. That was in May of 2012. In September, four months later, I woke up one morning with a lame thumb. I wasn't able to move it. The next day it was the other thumb that wasn't working. From that moment forward, my fingers and hands progressively grew weaker.
Soon my disability started to affect my work (as a case assistant for an arbitration forum in Los Angeles) and my commute (public transportation). I didn't dare say anything about my physical weakness for fear of being fired. I prayed nobody would notice or ask questions about my changing physical abilities. I often thought I would fall as I tried to step onto the Metrolink commuter train.
"I encourage you all to share your stories -- yours inspired me to share mine. Come together to participate in clinical studies, drug treatments, and therapies. Share your data and history to help others, and donate your resources to help find treatments and a cure. Please do it now while you can and have time."
Sadly, I also encountered cruel people. Once, as I stepped off the bus, a girl behind me got impatient and shoved me. I went down but fell on some people in front of me who were very gracious.
These events re-ignited my quest for a diagnosis. I saw three or more neurologists in the West Los Angeles area beginning the year I turned 52. Each specialist performed painful tests, but none knew what I had. Traveling the 55 miles to West Los Angeles became increasingly difficult. It could be three hours or longer, depending on traffic and weather. So, I decided to switch to another medical network closer to my home. There was only one neurologist nearby; lo and behold, it was the same doctor I had met when I was 30. He remembered me from 24 years before! And he recalled my jumpy muscles. He tested me again and still could not diagnose me. He was delighted to hear about my travels and that I had visited Italy.
This gracious physician referred me to the "best neuromuscular specialist in Southern California." That is when I met my current neurologist at USC Keck Medical. While his office was still in Los Angeles, it was East Los Angeles and only an hour away. He recommended IVIG treatment off and on over two years until he could no longer justify it (it did make me feel stronger temporarily). He also performed genetic testing in late 2016 after conducting the insurance-required spinal tap and muscle biopsy. The results showing the VCP mutation came in early 2017. I was 57 years old. Very little information about VCP was available, and I searched everywhere for answers to my questions. I needed help. I felt lost and alone.
That same year, I decided to sell my two-story home. I bought a lower-maintenance single-story condo and applied for permanent disability. I also went on disability at work, keeping my fingers crossed I would be approved for permanent disability with social security. I had been warned by everyone I talked to that I would automatically be denied and would have to appeal--likely having to hire lawyers. Luckily, my neurologist knew how to make it happen. I was approved for permanent disability in just five months. Once again, I was blessed.
Where the disease originated was still a mystery. No one in my family, including my four sisters or my father, had any of my health problems. I discovered I was adopted when I was 30 years old and had been searching for my birth mother ever since. I believed the gene mutation might have come from her and her family.
In 2020, I turned 60 years of age. It was another momentous year for me:
I discovered the Cure VCP Disease organization and others impacted by VCP disease (they are life-changing!).
My company offered me and a small group of employees early retirement (I was still on their disability plan), which allowed me to keep most of my medical benefits and healthy severance that helped with my increasing medical expenses.
COVID happened, which hastened my weaknesses because I stopped socializing and ultimately lost my ability to drive.
I got my three kids and their families together and took a cherished family photo.
The Dodgers won the World Series!
I finally found my birth mother.
Having finally found my mother, I thought I was about to identify the source of this d*** mutation. But, as it turns out, no one on my birth mother's side of the family has VCP disease.
My dad had two brothers and three sisters. I had met them throughout my life and stayed in touch with most of my cousins. None have experienced symptoms of VCP disease. However, I have a cousin who has been in a wheelchair for approximately five years due to the effects of Agent Orange muscle deterioration from his service in Vietnam and possibly ALS. I discovered this from one of my sisters, who knew about my diagnosis of VCP disease and was told that he had been diagnosed with VCP disease too. I haven't been able to confirm his diagnosis directly with him.
While I still don't know where this horrible disease originated, I am grateful for how blessed I am and the VCP community that has become my lifeline.
My days are spent coordinating my caregiver's schedules, talking with visiting friends, and watching the Dodgers on TV (there are no more trips to the stadium, unfortunately).
I encourage you all to keep up the great work the Cure VCP Disease organization is doing... share your stories -- yours inspired me to share mine, come together to participate in clinical studies, drug treatments, and therapies, share your data and history to help others, and donate your resources to help find treatments and a cure. Please do it now while you can and have time.
Thank you for reading my story and being a part of my journey. I am so grateful to you and my VCP family.
Daughter, sister, cousin, friend, mother, grandmother, professional, lover of Italy and traveling, and VCP disease patient.