Congenital Leptin Deficiency: When Enough Isn’t Enough

Imagine sitting down at the table. You put a normal amount of food on your plate and you begin to eat. Then, you take a second helping of everything and you eat that, too.

The thing is, no matter how much you eat, your hunger will never feel satisfied—and it may be caused by congenital leptin deficiency.

And despite what you’ve been told, no matter how many times you’ve been shamed because of your obesity, it is not your fault.

A person with congenital leptin deficiency starts off at a normal weight at birth, but they gain weight at an alarming rate because of the insatiable hunger. If the medical community fails to correctly diagnose the patient with this disorder, the patient develops chronic excessive overeating, also known as hyperphagia—as well as obesity. Children will hoard food, eat where no one can observe them, and even fight others over food.

If that’s not enough for the rare patient, people with congenital leptin deficiency also have a condition caused by a hormone deficiency that directs sexual development: hypogonadotropic hypogonadism. This delays or prevents the patient from going through puberty, and may render them unable to conceive a child.

If you have this rare condition, you are not alone, and you don’t have to try and figure out everything on your own. The Obesity Action Coalition, or the OAC, is there for you. Apart from those who have congenital leptin deficiency, the OAC is also available to assist the more than 93 million Americans who are obese. This is a fantastic organization, and has a lot of resources and ways to get support.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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