Hypothalamic Hamartoma (HH) is a benign tumor-like malformation that causes a syndrome characterized by: 1) treatment-resistant epilepsy, beginning with gelastic (laughing) seizures, but later including other seizure types, 2) developmental and cognitive deficits, 3) behavioral problems, including rage attacks, and 4) endocrine disturbance, most commonly central precocious (early) puberty.
Put Hope for HH on the MAP! Download the Hope for HH flyer and take a photograph at home and during holiday travels. Let’s see how many places our community spans around the world.
Five year old Varvara Finogenova is seizure free after thermal coagulation done by Dr. Kameyama in Japan this summer.
We understand the importance of connecting with others when it comes to dealing with the many complicated aspects of HH. Join our Forum and become a part of an amazing international support community.
Providing information and support to hypothalamic hamartoma patients, caregivers, and healthcare providers and promoting research toward early detection, improved treatments, living with HH, and cure.
This site includes files that require Adobe Reader.
To stay abreast of what is happening in hypothalamic hamartomas, visit the Chairman’s Corner. Read the latest information from our Chairman Dr. Rekate or our guest authors.
I was born 30 years ago with my umbilical cord rolled up around my neck twice, all blue, and quite a big head. My mother noticed early on lots of shortness of breath and cramps. I had my first tonic-clonic seizure when I was 18 months while my father was taking some photos in my grandparents’ garden. Read more..
Looking for the perfect holiday gift? How about a Hope for HH t-shirt or belt buckle for yourself or a loved one.
Jake Case (1982 - 2012) Read more..