“It’s like being in a deep dark hole and you’re screaming for help and people are just walking by and nobody can hear anything,” said Rebecca Halstead of Currituck County, North Carolina.
Halstead is describing her battle against gastroparesis. Her stomach is essentially paralyzed meaning much of the food she eats goes undigested. Eating and sometimes drinking anything at all leads to unbearable pain.
“I feel like someone’s dragging nails across my intestines,” said Virginia Beach mother Kristi McAloon who also suffers from gastroparesis. “It’s living every day not knowing if the food you’re going to eat is literally going to kill you because it just sits there and it rots.”
Halstead and McAloon are a group of local women who are pushing for cures, awareness and a better standard of care for gastroparesis patients. There are nearly 5 million people in the United States suffering from the cruel condition, and those with the severest forms gastroparesis are left with little options for cures or a chance at a normal life.
“I’m more afraid of eating than I am of anything else,” said Virginia Hurst. “I mean I’m really not afraid of life. I’m afraid of eating.”
These women are a fraction of gastroparesis suffers nationwide who are demanding the Social Security Administration consider gastroparesis as a disability.
“I’ve been out of work for a year,” said Halstead. “[You] go to bed praying that God will take you home and then wake up crying in the morning because you have to figure out how you’re going to pry yourself out of bed and go to work.”
“You’re living every day with the stomach flu,” said McAloon. “Do you go to work when you have the stomach flu? We have to because there’s no help for us. The government doesn’t recognize it.”
So far, more than 16,000 people have signed the petition to the SSA. Doctors who specialize in gastroparesis research said it is a condition that is debilitating and life changing.
“This is a whole layer of suffering that goes along with gastroparesis,” said Dr. Kennth Koch, a leading researcher in gastroparesis. “Many people don't appreciate how serious gastroparesis is in terms of affecting very common parts of every day life.”
Koch said severity can range from mild and manageable with a restricted diet, to severe cases where no food at all can be digested. Patients in these stages have to have feeding tubes or other surgically implanted devices in order to receive any nutrition.
“There is a group that continually loses weight,” said Koch. “They get dehydrated. They don't take in enough calories to support their weight.”
“It will make you quit eating,” said Halstead. I’m 93 pounds now and that’s not my choice.”
While doctors like Koch can spot the signs and symptoms, many sufferers say emergency room and general doctors are not following a uniform protocol to diagnose people. Many go in and out of hospitals for years before the right tests are done. They lose patience, time at work and weight in the process.
“I wish the doctors would explain more to you,” said Hurst.
“People are dying and we have young kids in the group, we have babies in the group,” said Halstead.
“We’ve lost so many people,” said Allison Dickson.
That is why these women continue to fight for recognition and awareness.
“I’m going to keep fighting so I’m not going away until I’m gone,” Halstead said.