After rapid weight loss, a doctor diagnosed Bella Johnston, then 14, with an eating disorder. The young woman suffers from a rare type of cancer that almost costs her life due to the misdiagnosis.
The descriptions of the young Australian Bella Johnston sound worrying. For months she was plagued by weight loss, shortness of breath and vomiting, but her doctors didn’t take the young woman seriously. Instead of conducting an investigation, they diagnosed Johnston with an eating disorder. “Once that was written down, no one believed me anymore… I was never offered a scan, a CT scan, an MRI or anything like that,” Johnston, now 27, tells Mamamia.
The then fourteen-year-old lost 25 kilograms of body weight in just a few months. In addition, she suffers from dizziness, exhaustion and a persistent cough that even causes her to faint at times.
After the hasty diagnosis of anorexia and bulimia, it took years until the Australian woman’s suffering was taken seriously. Desperate, she goes on a search herself, researches online, and comes across alternative medicine. A naturopath advises her to take Epsom salt baths and bone broth. He attributes her symptoms to a “clogged gland.” The young woman is willing to follow his advice because she wants to find out what’s wrong with her body. “I made so much damn soup, took so many damn Epsom salt baths,” she says now.
Johnston finally receives the redemptive diagnosis by chance. With a bad burn, she goes to a doctor. “He looked at me and asked: ‘What’s wrong with you?’ I looked like death. I weighed 43 kilos, was pale and had very low blood pressure,” says the 27-year-old. At this point she barely has the strength to stand upright.
During an operation, doctors finally found a malignant tumor in her neck. The diagnosis is: paraganglioma. These are stress hormone-producing, usually benign tumors that can occur in the head and neck, chest or abdominal area.
Symptoms vary depending on where the tumor is located in the body. According to the University Hospital of Zurich and the Pituitary and Adrenal Diseases Network. V. typical symptoms can be:
The symptoms are often part of the body’s typical stress reactions, triggered by an uncontrolled release of stress hormones such as adrenaline and noadrenaline. The hormonal balance is disrupted by the tumor on the autonomic nervous system. A diagnosis is often not easy due to the ambiguous symptoms.
Because Johnston’s symptoms were not taken seriously for a long time, the cancer has already spread throughout the upper half of her body and affected large parts of her nervous system. “When the surgeon opened me up he said it looked like rotten fruit. It was everywhere.”
Due to the enormous size of the tumor, the salvage operation is not easy. Doctors damaged her nerves, paralyzing her right arm and part of her tongue and vocal cords. Johnston struggled with the consequences for a long time, including mentally. Lastly, because it is suspected that the cancer may have already spread to the brain.
After further investigations, however, there is finally the saving news: the brain is healthy, there is hope. “Everyone was celebrating,” Johnston remembers. “It was a big deal in the hospital.” The doctors even called it “a miracle.”
After a long period of radiation therapy, the young woman is now finally cancer-free. Luckily for them – after the long failure of the health system. “I think it was easy for doctors to force a mental health diagnosis on me as a young girl. And I don’t think they would have done that if I were a boy,” concluded the 27-year-old.
