CHARLESTON, W.Va. -- Debra Kinder pinched the clear tube protruding from her stomach and watched as a thick, light brown liquid oozed from a small hole in its rubber.
"It's leaking down the side of the tube -- there are little crinkles in the side of the tube," she told a Cleveland Clinic doctor on the phone. "The stoma site is pretty sore, and I've been having some other complications, as well."
Kinder, 47, of Charleston, suffers from gastroparesis, a chronic illness characterized by stomach paralysis. GP causes the stomach to empty slowly or not at all, and sufferers commonly feel nauseated, bloated or prematurely full after eating. The severity of Kinder's case means she needs a feeding tube, but she faces obstacles at every turn fighting a disease she and others believe is widely misunderstood.
Kinder said she believes she has been dealing with symptoms of GP for decades, but wasn't diagnosed with the disease until 2011, when doctors had her eat an egg and toast dyed with iodine and measured the amount of time it took for her to digest more than 50 percent of the meal. Her tests clocked in at 238 minutes for her to digest 57 percent of the meal -- well beyond normal for a woman her age.
She received her feeding tube, but Kinder said subsequent care for her condition has been difficult. She has a range of medical issues, including a heart condition that requires a pacemaker, and is subsiding on disability payments after she was forced to quit her job as a social worker. However, she said her biggest obstacle is getting doctors to believe she is sick. Kinder has a history of mental-health issues, including depression and anxiety, and has been accused of attention seeking and drug seeking -- something she said many fellow GP sufferers have experienced.
"I don't want to put the doctors here in a bad light," she said. "When we're suffering from a bad flare, we have to go to the emergency room because we're in so much pain, a lot of doctors look at us like we're drug seeking. We have a lot of trouble with the medical field because of it."
The problem extends to medical supplies, too. Kinder needs a tube belt to secure and protect her stoma site, but the belt and supplies range between $100 and $180, and aren't covered by her insurance, even though Kinder is allergic to the adhesive in most bandages and suffers from rashes. She has been visiting the Cleveland Clinic for care, but said she has trouble with transportation, and couldn't afford a hotel if forced to stay overnight.
During a stay in Cleveland, Kinder was provided with Total Parenteral Nutrition, in place of her feeding tube, and did very well, but she said her doctor refused to transition her to TPN once she returned to Charleston. TPN is expensive, compared to a feeding tube, and can cost as much as $6,000 per week and is not covered by most insurance companies, according to Gastroparesis-Patient Association for Cures and Treatment, the support group that Kinder considers a key part of her treatment.
While her care might be overwhelming at times, Kinder said G-PACT has been instrumental in helping her emotional well-being. The national nonprofit group has attracted a network of GP sufferers, and has inspired Kinder to reach out to area sufferers in the hope of starting a local group.
"The community is very supportive. Even if I can't start a group, I want to get the idea out there," Kinder said. "I'm looking for two things -- I'd like to find a place to have group meetings, and I want to get my information out there so that people can contact me, because I desperately want to start a group here."
For Colleen Beener, operations director for G-PACT, the group's goals are as simple as they are substantial: to raise awareness for an obscure disease, to seek a broader range of treatment options and to rally for a cure.
"Imagine having the flu or morning sickness constantly. My husband was sick a few days ago, and he said, 'I don't feel so well,' and I said, 'Imagine feeling that way for the last 15 years,'" she said. "That's what it is, day to day; you never feel really, really good. At the very least, we would like more treatment options and, ultimately, we'd like to see a cure. There is some really good research going on. There are motility doctors at Temple University and Wake Forest, and there are other places, I'm sure, but they have trouble getting research money. They're constrained by that."