Living with Subependymal giant-cell astrocytoma
A slow-growing, noncancerous brain tumor that most often appears in childhood or the teen years, often with tuberous sclerosis.
Understanding Subependymal giant-cell astrocytoma
It is the most common brain tumor in people with tuberous sclerosis complex. It usually occurs during the first two decades of life. It is made of large astrocytes, a type of brain support cell. It is a WHO grade I tumor.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
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 and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Pediatric Brain Tumor Foundation
- 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
GARD doesn't describe a cause for this condition yet, but notes it is most common in people with tuberous sclerosis complex.
Also known as: sega; sega - subependymal giant cell astrocytoma; subependymal giant cell astrocytic neoplasm; subependymal giant cell astrocytic tumor; subependymal giant cell astrocytic tumour; subependymal giant cell astrocytoma
Patient organizations
- Pediatric Brain Tumor FoundationSubependymal giant-cell astrocytoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Subependymal giant-cell astrocytoma.
Explore research for Subependymal giant-cell astrocytoma
Explore actively recruiting Subependymal giant-cell astrocytoma studies with HealthSpark.
Find actively recruiting studies for Subependymal giant-cell astrocytoma with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Subependymal giant-cell astrocytoma studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Subependymal giant-cell astrocytoma
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Subependymal giant-cell astrocytoma experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.