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Hypothalamic Hamartoma Support Page | |
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Welcome! 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. We currently have over 200 member families with 150 kids from around the world, including the United States, Canada, Costa Rica, South America, United Kingdom, Hong Kong, Singapore, Germany, South Africa, Tanzania, Belgium, Italy, Portugal, China, Palestine, Uruguay, Australia, New Zealand and other countries. We've changed the course of medicine by banding together as a group for our kids: From an article by Harvey, Freeman, Berkovic and Rosenfeld of Australia's RCH, creators of the new approach to resecting HH tumors: "We are also grateful to the patients, their families and the Hypothalamic Hamartoma Uncontrolled Gelastic Seizures (HHUGS) support group, who had faith and trust in our epilepsy program and assisted us with collection of accurate clinical information and follow-up; their efforts have definitely advanced knowledge and led to treatment advances in this rare and frequently devastating condition." LATEST NEWS
BARROW
NEUROLOGICAL INSTITUTE PERFORMING HH SURGERIES IN ARIZONA!
PROF ROSENFELD OPERATES IN SINGAPORE AND UK
Carl Christy Email: carl@hhugs.com Please Email me directly with some of your HH particulars to sign up with the discussion group! This page was last updated on: 02/12/2008 Visitors:
Webmasters: Craig Faulkner/Carl Christy With special thanks to Jill Potts, Founder
of The Joshua Potts Foundation
The HHUGS Family remember with fondness and love: Joshua Potts, 23 July 1988 - 25 June 1999 Curtis Lajeunesse, 10 September 1996 - 26 July 2000 Logan Nichols, 28 June 1983 - 9 September 2001 Heather Maxwell, 12 June 1980 - 17 April 2001 Tony Hennes, 21 May 1978 - 24 April 2002 William J. Sansalone, 24 May 1995 - 29 July 2005 Anthony Johnson, July 2 1993 - July 14 2007 | |
