If your doctor told you that you could eat pizza, meat, and other high-fat foods daily you would probably sign up for that prescription immediately. But if the catch was that it was accompanied with a rare disease…. you may back track. No matter how good it may sound on paper, nobody desires a rare disease.
A high-fat diet that includes 1,482 calories worth of meat, double cream, and oil may sound like any nine-year-old’s dream. But Daily.co.uk’s look into Amy Paterson’s life from the United Kingdom, shows it’s her reality.
Paterson is one of only 25 people in the U.K. diagnosed with Glut1, a condition that deprives the brain of glucose. The condition leaves people starved for energy. And for Paterson, she’s without the spunk and “get-up-and-go” of a “typical” child.
As a result of her diagnosis, Amy’s father, Allan, explains to the Daily.co.uk that his daughter must eat “three times as much fat her friends and drink as much double cream or olive oil in one meal as an adult would consume in a day.”
This is contrary to the instruction that doctors usually give parents of young children to ensure they have a well-rounded, lower-calorie diet.
As an infant, Paterson had experienced seizures, and unbeknownst to her parents, the seizures were related to the food she was eating—the wrong kind of food for her then-undiagnosed condition.
But Paterson’s parents are thankful for her diagnosis, especially after a misdiagnosis when Paterson was younger. With the news of her condition, her parents were finally able to adjust her diet. Thankfully, since her diagnosis, Paterson hasn’t experienced any seizures. But that doesn’t mean it’s easy.
Glut 1 currently does not have a cure, so for the time being Paterson will have to remain on her high-fat intake diet, unless there is a drug that’s developed to help manage it. And although other kids may think it would be awesome to eat some of their favorite foods, Amy would agree it’s harder then they would think.
Because so few people have this condition, there is little awareness. Her parents, and others with connection to the disease, want people to be aware of Glut1 because having the right diet, they say, is what will make all the difference.
Based on information from the NIH, Glut1 has had only 500 or so known cases since 1991.
If you think this number is off, You aren’t alone. To help spread the info about Glut1 and help curb misdiagnosis numbers, share this article to spread the word of this super rare disorder.