by Kevin Brewster
My family has a history of illness that spans generations, from my grandfather to my father, and now the illness has passed to my brother and me. My grandfather and my father both suffered from muscle weakness and bone disease, but they never truly understood their symptoms or knew what they meant. Back then, they didn't have resources to support and understand the cause of their symptoms. It wasn't until after my father’s passing that genetic testing shed light on my family's genetic predisposition to VCP disease.
Before my own diagnosis, life was relatively normal. I worked as a football coach at a local high school and spent the rest of my time with my wife and four kids. It wasn't until I noticed the subtle changes in my own body—struggling with stairs, trouble reaching for items—that I knew something wasn’t right. These seemingly small changes were all too familiar…I had seen them in my father. I decided to make an appointment with the neurologist to find answers. At first, I was diagnosed with limb-girdle muscular dystrophy, but an in-depth genetic panel at Johns Hopkins confirmed that I had a genetic mutation in the VCP gene that was causing inclusion body myopathy.
My heart sank with the news. Part of me already expected the diagnosis, but having it confirmed was simply defeating. The first few months were the hardest. I struggled with having to leave my job, losing a lot of my independence and most of all, not being able to physically show up for my kids. It led to anxiety and depression that I still see a counselor for today. It progressed so much that one day, I was ready to take my own life. I felt awful, but for some reason, my kids facetimed me at the exact moment and it was a turning point. I knew that I needed to be here for them.
Having VCP disease has forced me to reprioritize things in my life. Of course I miss aspects of my life before diagnosis, but I've also come to cherish the moments spent with loved ones now even more. These days, I get the greatest joy just watching my children play. I sit on the front porch, and I watch my kids running around, jumping on the trampoline, laughing, and I get this big smile on my face. All my pain…it just goes away.
The journey hasn't been easy, but I refuse to sit by and watch the rest of my life pass me by.
Discovering Cure VCP Disease has been a lifesaver. Knowing that there are dedicated individuals fighting for research and funding fuels my determination to keep pushing forward. Surrounding myself with understanding doctors, family, and organizations like Cure VCP Disease has made the burden lighter. So often rare diseases go unnoticed, so finding a community dedicated to fighting against them is a beacon of hope.
To those newly diagnosed and suffering, I offer this advice: never lose hope. Reach out to support networks, educate yourself, and advocate for research. Together, we can make a difference. And while the road ahead may be difficult, know that you are not alone.
In the face of adversity, I choose to be a fighter—not just for myself, but for future generations affected by VCP disease. And with each step forward, I hold onto the belief that a cure is within reach.
If you or someone you know might have VCP disease or wants to learn more, reach out to info@curevcp.org.
In hope, Kevin
Kevin, his friends and family have joined Cure VCP Disease to raise funds and awareness during the I CAN MOVEment on June 23-29, 2024. Click here to donate or join us,