Hope For Hypothalamic Hamartomas

Another common early seizure type associated with Hypothalamic Hamartoma Syndrome are dacrystic seizures. Like gelastic seizures, dacrystic seizures are classified as focal emotional seizures (source: ILAE). Dacrystic seizures appear like crying or sobbing but may have no emotion of sadness associated with it. These seizures often occur in conjunction with the gelastic seizure, but don’t always, and can occur alone. ILAE classifications of focal emotional seizure types: ⚠️ Focal emotional seizure with fear/anxiety/panic - characterized by the presence of fear, worry, anxiety or panic as an expressed or observed emotion, at the outset of the seizure. ⚠️ Focal emotional seizure with laughing (gelastic) - bursts of laughter or giggling, usually without appropriate related emotion of happiness, and described as 'mirthless'. This seizure type is characteristic of seizures arising in the hypothalamus (see hypothalamic hamartoma), but can occur in seizures arising in the frontal or temporal lobes. ⚠️ Focal emotional seizure with crying (dacrystic) - characterized by the presence of stereotyped crying, this may be accompanied by lacrimation, sad facial expression and sobbing. The subjective emotion of sadness may or may not be present. These seizures often accompany focal emotional seizures with laughing in the setting of a hypothalamic hamartoma. ⚠️ Focal emotional seizure with pleasure - characterized by the presence of a positive emotional experience with pleasure, bliss, joy, enhanced personal well-being, heightened self-awareness or ecstasy. ⚠️ Focal emotional seizure with anger - characterized by the presence of anger, which may be accompanied by aggressive behavior. This is a rare seizure type, anger and aggression, if present, are mostly seen in the post-ictal period. Source: https://lnkd.in/gFFpEiWa Learn More: https://lnkd.in/gMUM6DdP #NationalEpilepsyAwarenessMonth #NEAM2024 #HopeforHH #hypothalamichamartomas #StrongerTogether #braintumor #rareepilepsy #raredisorder #epilepsy #seizures #gelastic #dacrystic #awareness #TalkAboutIt #AimForZero #SUDEP

#NEAM2024 - The gelastic #epilepsy associated with Hypothalamic Hamartoma Syndrome is considered refractory or drug-resistant. It is estimated less than 5% of individuals with HH achieve seizure control with medication alone. For those with HH it is a daily struggle to find a combination of medications and surgical treatment to reduce seizure activity. Find out more about current HH treatment options: https://lnkd.in/gpNEKevM Learn more about Gelastic epilepsy here: https://lnkd.in/g8GX3Q3M #NationalEpilepsyAwarenessMonth #NEAM2024 #HopeforHH #hypothalamichamartomas #StrongerTogether #braintumor #rareepilepsy #raredisorder #epilepsy #seizures #gelastic #dacrystic #awareness #TalkAboutIt #AimForZero #SUDEP

#NEAM2024 - Gelastic (laughing) seizures are the hallmark seizure of Hypothalamic Hamartoma Syndrome (HH). The majority of individuals with this rare brain lesion will experience #gelastic or #dacrystic (crying) seizures and progress to other seizure types as other parts of the brain 'learn' to seize. Learn more about Gelastic epilepsy here: https://lnkd.in/g8GX3Q3M #NationalEpilepsyAwarenessMonth #NEAM2024 #HopeforHH #hypothalamichamartomas #StrongerTogether #braintumor #rareepilepsy #raredisorder #epilepsy #seizures #gelastic #dacrystic #awareness #TalkAboutIt #AimForZero #SUDEP

What Is Hypothalamic Hamartoma Syndrome? #NEAM2024 We need to continue to work together to bring much-needed awareness to this #rare brain tumor and epilepsy disorder. HH Syndrome is a complex ultra-rare brain tumor/lesion and epilepsy syndrome estimated to impact 1 out of 200,000 worldwide. Challenging to diagnose and even more difficult to treat HH is very much a spectrum disorder with symptoms varying from quite mild to devastating – and even life-threatening. Gelastic seizures typically don’t respond to medications and individuals can experience cognitive decline, hypothalamic rages, behavior issues, depression and anxiety, and other issues that impact overall quality of life throughout adulthood. Together we can increase knowledge in the general public, improve early diagnosis, and provide individuals with the information they need to manage their care or the care of their loved one. Learn more about HH here: https://lnkd.in/gWp2T-vz #NationalEpilepsyAwarenessMonth #NEAM2024 #HopeforHH #hypothalamichamartomas #StrongerTogether #braintumor #rareepilepsy #raredisorder #epilepsy #seizures #gelastic #dacrystic #awareness #TalkAboutIt #AimForZero #SUDEP

Did you know we are 1 in 3? #NEAM2024 For those with hypothalamic hamartomas and the associated #gelastic #seizures it is a daily struggle to find a combination of medications and surgical treatment to reduce seizure activity. At this time, there is not a specific AED (Antiepileptic drug) that is able to stop or even reduce gelastic seizures for the long term which often leads to seizure progression and cognitive decline. Please share with your family, friends, and communities. Learn more about #gelastic epilepsy here: https://lnkd.in/g8GX3Q3M #NationalEpilepsyAwarenessMonth #NEAM2024 #HopeforHH #hypothalamichamartomas #StrongerTogether #braintumor #rareepilepsy #raredisorder #epilepsy #seizures #gelastic #dacrystic #awareness #TalkAboutIt #AimForZero #SUDEP

Did you know one in 26 Americans will develop epilepsy in their lifetime? Help raise awareness by sharing this information during #NEAM2024. #1in26  Top causes of epilepsy include: ⚠️ Brain tumors ⚠️ Traumatic brain injuries ⚠️ Congenital conditions ⚠️ Autoimmune epilepsy ⚠️ Genetic disorders ⚠️ Strokes ⚠️ Alzheimer's disease ⚠️ Fevers or infections ⚠️ Low Blood sugar levels ⚠️ Abnormal electrolyte levels November is National Epilepsy Awareness Month (#NEAM). Let's unite to help end the stigma surrounding epilepsy disorders and generate compassion and understanding for those who live with daily seizures. #NationalEpilepsyAwarenessMonth #NEAM2024 #HopeforHH #hypothalamichamartomas #StrongerTogether #braintumor #rareepilepsy #raredisorder #epilepsy #seizures #gelastic #dacrystic #awareness #TalkAboutIt #AimForZero #SUDEP

We continue our #NEAM2024 campaign to educate and share information about seizures in our HH community as well as all who live with an epilepsy disorder. 'Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the U.S. as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition or may be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer's disease, and traumatic brain injury.' @epilepsyfdn Learn more about #gelastic epilepsy here: https://lnkd.in/g8GX3Q3M #NationalEpilepsyAwarenessMonth #NEAM2024 #HopeforHH #hypothalamichamartomas #StrongerTogether #braintumor #rareepilepsy #raredisorder #epilepsy #seizures #gelastic #dacrystic #awareness #TalkAboutIt #AimForZero #SUDEP

#NEAM2024 is our opportunity to join with other rare #epilepsy advocates and help us raise awareness on behalf of the 65 million people worldwide who live with seizures many whom like our Hope for HH community deal with medication-resistant seizures. Learn more about #gelastic epilepsy here: https://lnkd.in/g8GX3Q3M #NationalEpilepsyAwarenessMonth #NEAM2024 #HopeforHH #hypothalamichamartomas #StrongerTogether #braintumor #rareepilepsy #raredisorder #epilepsy #seizures #gelastic #dacrystic #awareness #TalkAboutIt #AimForZero #SUDEP

#NEAM2024 What is Epilepsy? #Epilepsy is a disorder of the brain that causes seizure. Seizures are a sudden, uncontrolled electrical disturbance in the brain which cause change in behavior, movements or feelings, and in levels of consciousness. Individuals with Hypothalamic Hamartoma Syndrome experience gelastic (laughing) and/or dacrystic (crying) #seizures. The seizure frequency for those with HH can vary from 1-2 per month to over 300 per day. Gelastic seizures can also be quite subtle. They are commonly mistaken for other conditions, particularly during early infancy, including colic and gastroesophageal reflux disease (GERD). Learn more about #gelastic epilepsy here: https://lnkd.in/g8GX3Q3M #NationalEpilepsyAwarenessMonth #NEAM2024 #HopeforHH #hypothalamichamartomas #StrongerTogether #braintumor #rareepilepsy #raredisorder #epilepsy #seizures #gelastic #dacrystic #awareness #TalkAboutIt #AimForZero #SUDEP

National Epilepsy Awareness Month (#NEAM2024) is our opportunity as the Hope for HH community to Educate, Advocate, and Get Involved in raising awareness of the rare #gelastic #seizures and other conditions associated with Hypothalamic Hamartoma Syndrome. Our call to action is for our community to join us by sharing our posts throughout November. Remember we are here for you! Our Hope for HH Community motivates us to invest in HH research, raise awareness, provide patient support, and advocate for those with HH Syndrome. #NationalEpilepsyAwarenessMonth #HopeforHH #hypothalamic #hamartomas #StrongerTogether #braintumor #rareepilepsy #raredisorder #epilepsy #seizures #gelastic #dacrystic #awareness #TalkAboutIt #AimForZero #SUDEP