A team led by Professor Kang Hoon-chul강훈철 of Severance Hospital세브란스병원 has published a book on dietary therapy for patients with adrenoleukodystrophy (ALD), to call more attention to saturated fatty acid intake during meals.
Titled “Dietary therapy for Adrenoleukodystrophy,” the book focuses on the disease that results in fatty acid buildup by the relevant enzymes not functioning properly, causing damage to the myelin sheaths of the nerves that stimulate seizures and hyperactivity. Other side effects include problems with speaking, listening, and understanding verbal instructions.
One of the available treatments is Lorenzo’s oil, a combination of two fats extracted from olive oil and rapeseed oil. It was developed by Augusto and Michaela Odone to treat their son, Lorenzo after he was diagnosed with ALD in 1982. The mixture of fatty acids in Lorenzo's oil works to reduce the levels of very long chain fatty acids, which are known to cause ALD.
Professor Kang has been working as a consultant for families with ALD since 2002. Patients suffering from this disease are relatively small, resulting in the lack of interest in studying ALD. Patients in Korea continuously voiced their dissatisfaction with the lack of information referring to the diet, which motivated Professor Kang to publish his book, the hospital said.
His advisory and nutrition team compromised a clear set of guidelines for meals applicable to Korean patients. The book introduces in detail what to eat, how to eat, and how to take a variety of Lorenzo oil to be consumed mainly in their food.
|Professor Kang Hoon-chul of Severance Hospital published “Dietary therapy for Adrenoleukodystrophy.”|
Based on the medical advice of Professor Kang, the nutrition team formed recipes requested by the patients while searching for ways to replace and limit saturated fatty acids. Thanks to this, a patient-specific recipe was created for dishes that were previously limited to patients, such as oven pork cutlet, pizza, spaghetti, clam chowder, potato, and hamburgers.
"In the United States, the dietary data was confusing because the food culture was different," said Bae Soon-tae배순태, who leads the group of ALD patients. "We are eager to have a book related to our food."
Professor Kang also said, "I am glad that I can meet with those who have the will to do anything, and I hope that the book will help improve patient’s health and quality of life.”
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