About Hope for HH

Hope for Hypothalamic Hamartomas (Hope for HH) is a volunteer-based nonprofit organization founded by parents of children with hypothalamic hamartomas (HH).  Our goal is to create a single, credible source for information about the diagnosis, treatment, and support of individuals with HH. Every family touched by this rare disorder has a unique and often heart-breaking story of how they attained a correct diagnosis. Obtaining a correct diagnosis can take months and even years and often involves incorrect diagnoses. Once a diagnosis is confirmed, many families struggle with choosing an appropriate course of treatment, if one is even available. Regardless of treatment, managing the daily lives of HH patients and dealing with the long term and frequently devastating effects of HH requires ongoing information and support.

OUR MISSION

Hope for HH seeks to provide information and support to hypothalamic hamartoma patients, caregivers, and healthcare providers and to promote research toward early detection, improved treatments, living with HH, and cure.

Supporting Patients and Caregivers

Hope for HH provides up-to-date factual information to HH patients and caregivers. Beyond the medical challenges, HH children, teenagers, and adults confront challenges in areas of behavior, education, socialization, employment, and independent living. Helpful information, as well as online support Forums, are available at this site as well.

 

Educating Health Professionals

HH can be difficult to diagnose by even the best trained medical professionals who do not have firsthand experience with HH. Medical tests such as EEGs and MRIs are often misinterpreted, or worse, end up being misleading. Too frequently, a misdiagnosis can lead to unnecessary interventions or even inappropriate major brain surgery that not only does not solve the HH, but can further harm the patient, delay a correct diagnosis, and compromise the patient’s quality of life and future options. Hope for HH will help educate health professionals to expeditiously detect, diagnose, and treat this condition.

 

Increasing Public Awareness

It is estimated that HH affects one in 200,000 people worldwide based on a 2004 Swedish study. [1] That number may be low given the large number of cases that go undiagnosed or misdiagnosed given the difficulties associated with accurately diagnosing such a complex condition. Hope for HH will help raise awareness about this condition to improve early detection and treatment.

 

Connecting Researchers & Funding Research Grants

Not enough research is looking into the cause, treatment, and cure, as well as how to improve the day to day lives of patients living with hypothalamic hamartomas. Patients, specialists, and treatment centers are dispersed internationally and lessons learned emerge slowly. Hope for HH will encourage collaboration among researchers worldwide and fund research to expedite our understanding of this condition. Unlocking the complexities of HH could result in a better understanding of the key issues related to catastrophic epilepsy and a brighter future for all individuals living with chronic seizures.

 


[1] Bramdberg G. Raomomlp R. Eeg-Olofsson O: Hypothalamic hamartoma with gelastic seizures in Swedish children and adolescents. Eur J Paediatr Neurol 8:35-44, 2004.