Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas – a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities for future HH research studies and collaborations to improve diagnosis, treatment and care of both the seizures…
We first introduced JoJo after his surgeries in 2011 when he was 19 months old. He had a full removal of his large Type 4 Hypothalamic Hamartoma (HH) after two surgeries, a craniotomy to remove 90% of the HH and then endoscopic to remove the remaining 10%. JoJo used to have 100 gelastic seizures a…
Being the caregiver of a child or loved one with a complex medical disorder who has health and behavioral issues is not easy, which is the driving force behind this year’s theme of the HH Blog. I combat this challenge too, as I am a parent of a child with a rare genetic disorder but…
As soon as Aiden was born he started having what we called at that time “tiny panic attacks” where he would have a very rhythmic cry for a couple of seconds and then his eyes would roll upward and to the left for a second while his arms flew out to his sides. It would…
So just what is a comorbidity and why is it important to an individual with a hypothalamic hamartoma (HH)? In medicine, a comorbidity is defined as a condition or symptom that occurs, or is seen more frequently with, a separate primary medical condition. In the case of epilepsy, common comorbidities include cognitive decline, memory loss,…
Hope for Hypothalamic Hamartomas (HH) is proud to partner with the Child Neurology Foundation (CNF) to conduct a brief survey to understand the caregiver’s experience when it comes to managing behavior in children with neurologic conditions. For many families with children and young adults with HH – dealing with the behaviors can be even more…
Hola comunidad de HH, mi nombre es Calebe, tengo 9 años. Soy de João Pessoa, Paraíba, Brasil. Tengo un hamartoma hipotalámico extraño (HH). Me diagnosticaron hamartoma hipotalámico (HH) en 2018. Sin embargo, desde mis primeros años de vida sufrí los síntomas de esta enfermedad. Siempre he tenido convulsiones, pero me llevó tiempo determinar la causa de estas…
[see translation here] Hello HH community, my name is Calebe, I am 9 years old. I’m from João Pessoa, Paraíba, Brazil. I have a weird hypothalamic hamartoma (HH). I was diagnosed with hypothalamic hamartoma (HH) in 2018. However, from my first years of life I suffered from the symptoms of this disease. I have always…
Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas – a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities for future HH research studies and collaborations to improve diagnosis, treatment and care of both the seizures…
The Heart of a Volunteer “The heart of a volunteer is never measured in size, but by the depth of the commitment to make a difference in the lives of others.” – DeAnn Hollis Greetings HH community! I wanted to take a moment and provide you some of my background. I was born, raised in…