Living with Hypothalamic hamartomas with gelastic seizures
A rare brain condition with early seizures that look like laughing or crying, caused by a noncancerous growth in the hypothalamus.
Understanding Hypothalamic hamartomas with gelastic seizures
The hamartoma is a noncancerous developmental growth in the hypothalamus. It causes early seizures that look like laughing (gelastic) or crying (dacrystic). In many people seizures progress to other types, with a decline in thinking and behavior problems. Some people also have early puberty.
Signs & symptoms
GARD doesn't list specific symptoms for this condition. Its summary describes:
- Seizures that look like laughing (gelastic)
- Seizures that look like crying (dacrystic)
- Focal and generalized seizures
- Decline in thinking
- Behavior problems
- Early puberty
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists, genetic specialists and seizure and epilepsy specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Hope for Hypothalamic Hamartomas and Epilepsy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Hope for Hypothalamic Hamartomas, Epilepsy Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Hope for Hypothalamic Hamartomas and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in genes (also called variants) cause this condition. GARD doesn't list a specific gene or inheritance pattern.
Also known as: gelastic seizures with hypothalamic hamartoma; gs-hh - gelastic seizures with hypothalamic hamartoma; hypothalamic hamartoma with gelastic seizure
Patient organizations
- Hope for Hypothalamic HamartomasHypothalamic hamartomas with gelastic seizures · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Hypothalamic hamartomas with gelastic seizures.
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