Chelsea Johnson, mother of a boy with hypothalamic obesity (HO), discusses the lack of understanding about this disease.
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.
Ms. Johnson notes that there is a general lack of information about the disease. She belongs to a Facebook group for families coping with this rare condition. Also helpful is the Raymond A. Wood Foundation. This foundation has a section on its website specifically about HO, which can be found here. However, as Ms. Johnson notes, more research about HO is desperately needed.
For more information about HO and other rare endocrine disorders, visit https://checkrare.com/diseases/endocrine-disorders/
