With Confusing Symptoms, His Disease Is So Rare It Has No Name

It’s a crazy story from Britain. 47 years old, Debbie Schwartz says she has known for years “of humiliation”. And for good reason: this teacher explains that she was never believed by doctors when she told them about her ailments. However, she does suffer from a disease, which has no name yet. Suffering from neurological, immune and movement disorders, her illness broke out when she was a child. Little by little, the ailments grow and she is forced to see dozens of doctors.

Debbie Schwartz talks about her past moments in the hospital : “As an 11-year-old kid, being told the tests don’t show anything, there’s no reason for the doctors to be wrong because they’ve done all these tests, it’s the doctors, they know it. The diagnosis must be that I made it up.” As an adult, she repeats tests. Results in 2005 will confirm that she suffers from an unknown disease. She suffers from a rare mitochondrial disease.

“They might come to the conclusion that it’s one disorder instead of all these separate disorders”

Following these results, “Doctors were starting to get excited because I was a unique case and thought it was interesting, but they lost interest when they were doing the tests and they still couldn’t come up with a diagnosis. Hopefully with a team of multidisciplinary doctors who see me as one, they might come to the conclusion that this is one disorder instead of all these separate disorders,” said Debbie who is awaiting a final diagnosis of the cause of all her ailments. Finally, the teacher is taken seriously. A real relief.