Advocating and Participating Gives me Hope
Hi, my name is Amy Casey, I was diagnosed in 2018 with VCP disease. While adjusting to life with a rare disease hasn’t been easy, I have become more spiritual and focused on self-care, while making it my responsibility to help find a cure. I told my story for the first time in May 2020. I was one of five patient speakers at the Cure VCP Disease organization’s Patient Listening Session led by the FDA’s Office of Patient Affairs.
Up until that point, I had only shared my diagnosis with a few of my family members and close friends. I discovered that through sharing my story I was able to let go of the heavy burden I was carrying. I hadn’t even told my children at that point, but sharing my story with the FDA gave me the courage to tell my children after 2 years of hiding my diagnosis from them. That day was filled with many emotions, but my family is stronger because of it. My family resorted to calling our condition “muscle disease” because we had received so many misdiagnoses. My father, grandfather, aunt, uncle, and sister all suffered from similar symptoms. My father had been misdiagnosed with ALS, muscular dystrophy, and spinal muscular atrophy. Eventually, he was told that they weren’t sure what he had and to just go live his life. Unfortunately, many of my family members passed away before they received a proper diagnosis of VCP disease. In January 2018, my aunt was finally diagnosed properly. It was VCP disease. At that time, some of my family members and I were able to take a genetic test. My sister passed away unexpectedly in March 2018 . . . I received my diagnosis one week after her funeral.
I was flooded with grief over the loss of family members. My dad passed in November 2016 and my stepdad in November 2017, and now my sister too. I was riddled with stress about my future and my children's future. My diagnosis wasn’t a complete surprise to me. Two years prior, I began noticing weakness in my shoulder when I was working out, lifting heavy weights. I was getting weaker, not stronger. I knew that something was wrong. I did not want to believe I would suffer the same fate as my family members. After all, the muscle enzyme test I underwent in 2014 had come back normal. I believed that I was at a low risk of inheriting the disease.
Knowing that VCP disease is inherited in an autosomal dominant pattern, I make space for my kids' questions when they come up. This transparency has been difficult at times, but I maintain an open line of communication. I’ve integrated myself in the work of Cure VCP Disease organization in the hope that we can discover treatments and cures in my lifetime. I'm actively a part of the solution. Are you?
Hope is something I work on daily. I am inspired by the research of CR Synder. He teaches that your emotions have a smaller role in hope than we think. Synder says that hope is made up of a "trilogy of goals, pathways, and agency.” Like him, I believe we experience hope when we can set a goal and work towards achieving that goal. The biggest example of hope for me is the work that is happening to help find treatments through the Cure VCP Disease organization. I got involved, I see the goals, I take the steps, and it gives me so much hope!
Actively participating in the mission of Cure VCP Disease, gives me an outlet to calm my fears because I can see the work being done. This organization has given me a sense of purpose and HOPE! My leadership roles include facilitating virtual happy hour events, serving on the board of directors, and connecting with VCP patients through a hospitable care team. I always remind this community they’re the friends and family I never wanted.
VCP Disease currently doesn’t have treatments or a cure. I channel my emotions and resources in support of the Cure VCP Disease organization. I participate in any research opportunity I can to help propel us toward treatments and a cure. I'm hopeful and want to spread hope to you… patients, family members of patients, and donors. If you are a family member, friend or colleague who wants to give us hope, support the funding of our research to help find a cure.
I thank you for the opportunity to let my story be heard, give you hope, and inspire you to join me in finding a cure for VCP disease.
Please give today as generously as you can. Be filled with hope and give it back.
Gratefully,
Amy Casey Daughter, sister, wife, mother, Iowan, professional, advocate, hope dealer, and an individual with VCP disease.
To learn more about Cure VCP Disease and the work we are doing, please visit www.curevcp.org