A year and a half into our rare disease journey, and I could go toe-to-toe with some of the most intelligent medical experts in the field. In fact, I have. I needed to. If I didn’t, Brett wouldn’t be where he is today. The day that Brett received his ultra-rare diagnosis of Hypothalamic…
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…
Diagnosing and classifying seizures recently became easier and more precise. The International League of Epilepsy (ILAE), the world’s main scientific body devoted to the study of epilepsy, revised its terminology in order to recognize that some seizure types can have different onsets; allow for classification when the onset of the seizure is not observed;…
We asked our patients recently and here’s what they shared… “When I had seizures as a kid used to get a feeling that went from my head to my gut. I used to feel them coming on and tell my parents.” “I didn’t feel anything in my stomach, but overcome with happiness/the need to…
Community Corner Join the Epilepsy Foundation and Hope for Hypothalamic Hamartomas on March 6 at 8:00 p.m. ET for a special Facebook Live, “When Laughing or Crying is a Seizure.” Did you know that some seizures consist of sudden laughing or crying that the person has no control over? These seizures, a type of…
Congrats to Hope for HH Medical Advisory Board members Drs. J. Helen Cross & Alexis Arzimanoglou, editors of the newly released publication, “Epilepsy Surgery In Children: Time is Critical.” The book includes contributions from other MAB members including Dr. Jack Kerrigan and A. Simon Harvey, as well as HH Symposium participants including Drs. Sarah Ferrand-Sorbets,…
I remember driving my car many years ago, listening to one of my favorite radio shows, Car Talk – Click and Clack The Tappit Brothers. At the close of their show on this particular day, they ended with the usual clever banter. But for me, this day would be anything but funny. One brother said…
