LITTLE ROCK, Ark. (KTHV) - Gastroparesis is a disease many have never even heard of, yet it’s estimated that up to five million people are affected by the disease in the U.S. alone.
Closer to home, one local woman is trying to raise awareness about the disease while fighting it herself.
When you watch 20-year-old Raven Walton dance, you’d never know she’s battling a chronic illness. That’s because she is dancing through the pain.
“Dance has been such a light in my life,” Raven said.
At 16, she was diagnosed with Gastroparesis; a condition where the stomach cannot empty properly. According to Walton, the illness comes with good days and bad.
“Some days I wake up and I feel normal. I feel like I could go work. I could eat some, but my body is not in a lot of pain. But then there’s days I wake up, and I feel like I’ve got the flu. My body aches, I wake up puking and the thought of food just makes me nauseous,” Raven described.
She owns a dance studio in Brinkley, competes in beauty pageants and never stops dancing, all the while fighting for her life.
“I know one day, eventually, I won’t be able to do all these things. I know my disease is going to progress to where I can’t. I won’t be able to own a dance studio. I won’t be able to dance, because I’ll be on a feeding tube. So, that’s why I’m doing it now, while my disease is not that bad. ”
Under her leotards and pageant gowns, Raven has a gastric pacemaker that’s keeping her alive. The pacemaker tells her stomach to empty. Raven says she’s lucky to have the device. Unfortunately, it costs tens of thousands of dollars and is not approved by the FDA, so it’s not covered by insurance.
Dr. Steve Ziller is a Gastroenterologist. He has not treated Raven, but he has treated thousands of patients just like her. He says patients who aren’t candidates for the pacemaker, or cannot afford it, are left with risky alternatives.
“The only medicine that the FDA approves is black-boxed, which means you really shouldn’t use it. The only thing I feel comfortable using is something that does not cross the blood-brain barrier, does not cause all the side effects, and unfortunately right now, many of my patients have to get it from outside the United States,” said Dr. Ziller.
Last summer, social media went wild with videos of people dumping buckets of ice water on their heads to raise awareness for ALS, or Lou Gehrig’s disease. Raven says Gastroparesis needs an ALS moment to put pressure on the FDA and insurance companies to make treatments more affordable.
“No one is going to know what this disease is unless someone starts getting out there and spreading the word about it.”