Hhugs

Description

We are a worldwide group comprised of families with a child or adult that has been afflicted with a Hypothalamic Hamartoma (HH). These benign tumors, which sit close or intertwine with the hypothalamus, usually straddle the optic nerve and make removal difficult. The tumors cause victims to have gelastic (laughing) seizures, sometimes tonic-clonic and drop seizures, "hypothalamic rage" behavioral problems, and frequently precocious (early) puberty. Some people with HH are also affected by Pallister-Hall syndrome, an extremely rare genetic disorder. Whilst the seizures resulting from HH are notoriously difficult to control, the good news is that are some things that can be done to ease the problems caused by a HH. This is where our Group comes in. If you or your child has this condition, and you have not heard of us before, welcome to our Group! We look forward to interacting with you via daily email, live chats, and in sharing information on how to deal with this terrible syndrome we call "HHUGS" (Hypothalamic Hamartoma, Uncontrollable Gelastic Epilepsy). On this website you will find more information about HH, references to medical articles, and news about the latest developments in treating this condition. You can also read the stories of other HH sufferers and have the opportunity to join our HHUGS discussion group, where you can share your thoughts and experiences with other HH families. This Group is truly international...

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