Bill Riter has been living with schwannomatosis pain for most of his life. The Children’s Tumor Foundation spoke with Bill this summer at the NF Conference about his journey living with schwannomatosis pain and his involvement with CTF. Read a portion of this interview and watch his video below.
CTF: Can you tell us a little bit about you and your journey with schwannomatosis?
BILL: My name's Bill Riter. I'm from Mayfield Village, Ohio, a suburb of Cleveland. I had pain most of my life. At the age of 23, I had my first tumor removed from my hip. It was not done at an NF center, and they simply said it was a benign tumor, which was good news. I continued to have pain for the next 25 years. And at the age of 48, I had an MRI ordered in the neck, because I'd had a kind of a paralytic event on a jet ski. And that MRI showed tumors throughout the neck. Then a full body MRI was ordered and it showed tumors throughout the spine and a few others in other places. And so . . . they used the confirming tumor along with the MRIs to confirm that I had schwannomatosis. I’m now 67 and have lived with the pain. I’ve had good treatments, and bad treatments. I’m now going to one of the major NF clinics. It’s given me a pretty good quality of life.
CTF: Can you describe NF, in your experience, in three words?
BILL: Three words: challenging, debilitating, and empowering.
CTF: What is your history with the Children’s Tumor Foundation?
BILL: I've seen the Children’s Tumor Foundation grow in the last 20 years. I'm fortunate that I have a dear friend in Cleveland, Rick Horvitz, who is currently Chairman Emeritus of the organization. He introduced me to the foundation, and I've just seen it grow. I've worked with the NF Registry, which I think is a tremendous resource for researchers. I've spoken at all kinds of conferences virtually. I'm a patient advocate in many ways and just happy to do whatever I can do to help in the future.
A big part of what I think is helpful for patients is the NF clinic network. And I would urge every newly diagnosed patient to get to one of the NF clinics. It's fine to get treatment in your home communities, but get a plan set at one of the major networks. And that's a mistake that I made. I mean, I got diagnosed at one of the best places in the country, and then I went home, and the treatment was ordered there by local doctors who didn't understand the disease. So go to the right people; go to people with a lot of experience.
CTF: What do you hope to see in NF research within the next ten years?
BILL: Well, of course, the buzzword is we want to end NF, but realistically what we want is for the younger people to have a better quality of life, those of us that are dealing with the disease, whether it's through gene therapy or some of the exciting other treatments that are out there. It's all about living a good life and, you know what, today is a good day.
CTF: Is there anything else you'd like to say?
BILL: You know what, don't let the disease debilitate you. Fight, live every day.
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The video below was recorded at the Children’s Tumor Foundation NF Conference in June 2022. To enable closed captioning, click the CC button.
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