Chelsea Johnson, mother of a boy with hypothalamic obesity (HO), discusses her and her son’s experience with his condition.
HO is a rare endocrine disorder characterized by severe and debilitating obesity. Signs and symptoms of hypothalamic obesity include excessive appetite, inability to feel ‘full’, and rapid weight gain. Additionally, people with HO tend to have a low metabolic rate, decreased physical activity, and excessive daytime sleepiness. Currently, there are no approved treatments specifically for HO. Standard treatment approaches for HO such as surgery, medication, and lifestyle counseling have been mostly ineffective. However, results from a phase 2 trial of the developmental drug, are positive.
As Ms. Johnson explains, her son, Silas, had a brain tumor that wrapped around the hypothalamus. Though he was treated with radiation at a young age, damage to the hypothalamus most likely led to his HO. Ms. Johnson notes that a turning point for her in realizing the severity of his condition was a night that she woke up to him laying in his own vomit yet still continuing to eat peanut butter out of the jar.
Ms. Johnson in private noted how HO affects her son’s experience in school. He is on an individualized education program where he is taught in his own classroom and spends little time with other students due to his aggression and impulsivity. Ms. Johnson wishes that others understood that her son has a very low quality of life due to the severity of his HO.
People can learn more about HO from the Raymond A. Wood Foundation website, including a special webpage dedicated to HO: https://www.rawoodfoundation.org/hypothalamic-obesity.
For more information about HO and other rare endocrine disorders, visit https://checkrare.com/diseases/endocrine-disorders/