Hello, my name is Lisa Scheidel Huls. I live in Iowa with my husband Josh and daughter Alexis, “Lexi,” who graduated from college last year. We are so proud of her and hopeful for her future.
I am a VCP disease patient. What’s VCP Disease? VCP disease is a devastating disease that has had a detrimental impact on our family. It can cause dementia, muscle myopathy, Parkinson’s disease, CMT, and ALS. Unfortunately, several family members throughout the generations have been diagnosed with each of these diseases. We would soon learn that the various diseases that plague our family can be traced to a mutation in the VCP gene. Unfortunately, VCP disease has been genetically passed to me through my father’s side of the family. We didn’t know or understand what I had until my sister noticed that our cousin, Katie, walked similarly to me. We both walked with a waddle and shuffle with a sway in the hips. I have had a long history of medical problems, and I've often been misdiagnosed and left without proper treatments or relief. Katie was also suffering from some of the same ailments as me. It’s because of the similarity in our symptoms that we discovered that this horrible disease has a name. Finally, we had an answer to what my family calls “the curse.”
My grandmother, father, two of his siblings, and likely many of my ancestors, all passed away from this horrific disease before anyone even knew what it was. Sadly, many of my relatives didn’t live past age 55. It makes me nervous because I’m still young. I am 46 years old. I have a lot of love left in me that I want to share with my family and friends. Yet, I feel like I’m chasing the clock! I wish that I could run. I now get around with the help of a walker or a power wheelchair, but I CAN still MOVE!
My disease presents challenges for me on a daily basis. Yet, despite all of this, I am strong in hope. Hope for awareness. Hope for increased research. Hope for your support. Hope for treatments. And ultimately, hope for a cure! Because I CAN, my family and I joined the I Can MOVEment with the Cure VCP Disease organization. Please join our team, Laps for Lisa, to show your support.
Pick your activity and demonstrate that you're a part of the MOVE-MENT to fight VCP. Donations are also greatly appreciated!! Or create your team because you CAN! VCP may be rare, but it devastates the families impacted. And, VCP research can help other diseases like cancer. Please help the VCP community find treatments and a cure because you CAN! We are counting on YOU! Yours in Hope, Lisa Scheidel Huls Sister, Cousin, Niece, Wife, Mother, Iowan, and VCP Disease Patient