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For Families
Getting a new diagnosis can be frightening and overwhelming. There is a whole new vocabulary you have never heard before, and not understanding it can mean confusion and further isolation. Start here to learn the basics and make informed decisions.
For Professionals
Correctly diagnosing a hypothalamic hamartoma (HH) can be challenging for even the most experienced professional. Start here to gain a better understanding of the comorbidities associated with a hypothalamic hamartoma and the appropriate diagnostic tools available to providers today.
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Your contributions are a critical part of our efforts to provide support to patients and families, educate medical professionals and therapists, and to encourage researchers to seek answers to this very complex condition. Start here to read more and support our on-going efforts.
1 in 200k diagnosed worldwide
Often goes undiagnosed or misdiagnosed for years
Seizures commonly unresponsive to medication
Can result in cognitive and behavioral deterioration, learning disabilities, endocrine dysfunction and sleep disturbances
For those families following efficacy of CBD discussions, this report concerning a trial of CBD in Dravet Syndrome (another rare epilepsy) may be of interest. http://www.nejm.org/doi/full/10.1056/NEJMoa1611618
We have lost several HH patients to SUDEP and strongly endorse more research to understand what causes it and identify strategies to prevent it.
http://www.hopeforhh.org/blog/aan-aes-endorse-a-new-clinical-guideline-on-sudep/
AAN & AES endorse a New Clinical Guideline on SUDEP The American Academy of Neurology and the American Epilepsy Society recently published a practice guideline providing recommendations for neurologists to inform all individuals with epilepsy about the risk of sudden unexpected death due to epilepsy...
hopeforhh.org
Read about Colby's exciting superhero adventure!
Good Grief Batman! For a 5 year old boy recovering from HH surgery, what could be better than watching old Batman reruns on tv? Maybe a trip to the Batcave and a ride in the Batmobile? Impossible you say – not for kids living in...
hopeforhh.org
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