Living with Childhood ependymoma
A rare tumor that starts in the brain or spinal cord and is more common in young children.
Understanding Childhood ependymoma
Ependymal cells line the spaces in the brain and spinal cord and make cerebrospinal fluid (CSF), which cushions them. The tumor can spread when CSF carries cells to other parts of the central nervous system, but it rarely spreads outside it. It makes up about 9% of childhood brain and spinal cord tumors, affecting about 200 children a year in the United States. Children and adults can get it, but it is more common in young children.
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Collaborative Ependymoma Research Network may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Collaborative Ependymoma Research Network
- 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 Collaborative Ependymoma Research Network
- 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 says ependymomas start when ependymal cells grow without control. It doesn't describe what triggers this.
Also known as: ependymoma of childhood; paediatric ependymoma; pediatric ependymoma
Patient organizations
- Collaborative Ependymoma Research NetworkChildhood ependymoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Childhood ependymoma.
Explore research for Childhood ependymoma
Explore actively recruiting Childhood ependymoma studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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