Neurological Comorbidities

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...
Psychiatric and Behavior Symptoms

Psychiatric and Behavior Symptoms

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...
Thriving with HH

Thriving with HH

Hope for HH recently caught up with Sierra Crislip, a young woman that is not just living with HH but thriving with HH. She recently became a published author with her first book titled, Weird Girl with a Tumor! It is a very powerful look into the life of a young girl...
Endocrine Comorbidities

Endocrine Comorbidities

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...
Update on JoJo

Update on JoJo

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%. ...