Emma, a 17-year-old girl, has talked candidly about having gastroparesis, a rare disorder that has prevented her stomach from functioning since birth.
In a July TikTok video that went viral on Monday, Emma, who uses the username emmakok, disclosed that she has never had a healthy meal and depends on feeding tubes for survival.
She clarified that she needs feeding tubes to stay alive because she is unable to consume any simple food.
She said, “Hi, my name is Emma. I am 17, and I have a chronic illness called Gastroparesis. Gastroparesis simply means my stomach is paralysed; it doesn’t work. Because my stomach is paralysed, it can’t digest any food. I also can’t eat, so I have two feeding pumps.
“These are the two. They’re for my intestines and stomach. I have had these two feeding pumps since I was a baby, so I have never eaten anything.”
Emma clarified that although she can occasionally tolerate small amounts of water, tea, or honey, she has never consumed everyday foods like spaghetti, chocolate, or burgers.
“I can eat the tiniest bits, like honey, a cup of tea, or simply just some water, but I have never eaten a burger, chocolate, spaghetti, or anything. That makes it even harder because food is a big thing in someone’s life.”
Unknown condition
The teen emphasised the challenges of having a condition that is still mostly unknown and that many patients are misunderstood.
“Gastroparesis is not a well-known disease, making it hard for us patients with Gastroparesis. We’re not very well heard in hospitals, but we have real symptoms. But the doctors call it anxiety or stress, and that makes us feel pretty stupid.”
Further, Emma urged more awareness in her video.
“I am making this video to share this illness, spread awareness, and be heard. So please just listen,” she concluded.
What is Gastroparesis?
The American College of Gastroenterology defines Gastroparesis as a chronic condition with delayed stomach emptying without obstruction. When the stomach contracts normally, it helps break down food that has been consumed. The pulverised food is then sent into the small intestine for additional digestion and nutrient absorption.
Although the exact cause is sometimes unknown, the condition is frequently brought on by infections, diabetes, nerve damage, or surgery.
Symptoms of Gastroparesis
Among the symptoms are bloating, abdominal pain, early fullness, weight loss, nausea, and vomiting of undigested food. Patients in severe cases, like Emma’s, are unable to eat at all and are dependent on intravenous nutrition or feeding tubes.
While there isn’t a cure, the goal of treatment is to control symptoms with dietary modifications, drugs that encourage stomach movement, and occasionally surgery. Severe cases may require permanent feeding assistance or gastric pacemakers.
Gastroparesis is still underdiagnosed and poorly understood worldwide, with many patients complaining that their symptoms are disregarded or mistakenly ascribed to anxiety and stress.