Rare Syndromes That May Occur With Hypothalamic Hamartoma Syndrome A syndrome is defined by a large group of symptoms and/or other conditions that consistently occur together. Hypothalamic Hamartomas have become known as a rare syndrome, based on consistent comorbidities (symptoms and/or syndromes that consistently occur together) of epilepsy, endocrine dysfunction, as well as cognitive…
HH Comorbidity Survey – Initial Results Neurological issues associated with hypothalamic hamartomas have been well studied in the last 10 plus years. However, when it comes to the cognitive challenges experienced by individuals with HH, the number of studies is extremely limited. While professionals can agree that cognitive abilities and behavior are often impaired in…
HH Comorbidity Survey – Initial Results In today’s blog on the initial HH Comorbidity Survey results, we are going to share the surgical treatment spectrum as reported by survey participants. This information was shared by individuals with HH or caregivers of individuals with HH. It is important to note that individuals may have had more…
HH Comorbidity Survey – Initial Results Today we continue our blog series discussing the initial results of the HH Comorbidity Survey on HH comorbidities, or co-existing conditions. We believe these symptoms and conditions may be un-diagnosed or under-diagnosed as a part of the HH Syndrome. If you have not read the first blog in this…
In 2019, Hope for HH launched a comprehensive HH Comorbidity Survey. The goal is to better understand the co-existing or comorbid conditions and symptoms that individuals were experiencing along with HH, but perhaps not receiving an official diagnosis for. In this series of blogs, we plan to share some of the initial findings and perhaps…
We are only a week into the HH Comorbidity Survey and the participation has been amazing! We hope to have at least 200 participants by the end of July and it looks like we can certainly make that number and perhaps more! A huge thank you to all who have already participated! Today I want…
Neurological Comorbidities and Hypothalamic Hamartomas (HH) Probably the most studied comorbidity associated with hypothalamic hamartomas (HH) is epilepsy. For many individuals with HH, it is intractable epilepsy – uncontrolled seizures that are frequent and drug-resistant. Most often, the HH associated epilepsy starts with gelastic (laughing) seizures or dacrystic (crying) seizures at a very early age…
While other hypothalamic hamartoma (HH) comorbidities have been studied in more depth – the psychiatric and behavior components of this rare syndrome have not. We, as a community of patients and caregivers, have long struggled to understand the reasoning behind what we are told are conditions that are “likely” related to HH and which ones…
In my last blog, I introduced the concept of comorbidities and hypothalamic hamartomas (HH). If you happened to miss that blog, you can read it here. In that blog, I noted that in medicine, a comorbidity is defined as a condition or symptom that occurs, or is seen more frequently with, a separate primary medical…
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,…
This year Hope for HH is celebrating its 10th Anniversary! Over the next year, we look forward to sharing some of our greatest achievements in the last decade and developing our vision for the next 10 years! As part of our vision for 2019, we will be focusing on 3 C’s. They are: Comorbidities, Community…
