Since both Renee and this cause are extremely near and dear to me, I've asked her to to share her experience in her own words so that you can learn more :)
As Julie said, we will be running in the Rite Aid Cleveland 10K on May 20 for research and awareness of Von Hippel Lindau (VHL). Von Hippel Lindau is a rare, genetic disease that I was diagnosed with when I was 17 years old. My dad and brother also have the disease. It is characterized by the abnormal growth of tumors in certain parts of the body such as the brain, spinal cord, adrenal glands, eyes, kidneys, and pancreas. Unfortunately, there is currently no cure for VHL. Treatment involves being proactive and early recognition of tumors. Tumors can essentially develop out of nowhere, so frequent scans and consults with doctors are very important. Tumors are removed when they start to grow and ultimately become problematic.
Throughout the past eleven years since I was diagnosed, I have met many people that went years, or even decades, unknowingly living with VHL. They were being improperly diagnosed, and suffering pain from reoccurring tumors. Hearing about these experiences was one reason why I wanted to sign up for and participate in the 10K. I wanted to raise awareness for a disease that very few people really know about. If more people can become aware of the signs and symptoms of VHL, hopefully we can see an increase in people being properly diagnosed!
When you have a chronic illness such as VHL, it is very easy to feel defeated or to feel as through you have little control over your life. My family and I have lived through lung cancer, surgeries, and countless hours spent in waiting rooms unsure of the news that we were going to receive. During my most recent trip to the hospital last August, I found out that a tumor on my brain had grown and there was some swelling in my brain. The following day was the day that I decided I wanted to participate in a race. By training for the 10K and challenging myself physically, I feel as though I am taking back some of that control I thought I had lost. Through fundraising for the race, I feel like I am doing my part, no matter how small, to get one step closer to a cure. I am looking forward to the experience of participating in my first 10K, especially because my family and many of my close friends will be running with me. We will be “taking strides towards a cure,” and I pray we will get there someday soon!