Living with Dysembryoplastic neuroepithelial tumor
A benign (non-cancerous) brain tumor, usually in the cortex, in children and young adults who have had partial seizures for a long time.
Understanding Dysembryoplastic neuroepithelial tumor
It is usually found in the outer layer of the brain (the cortex). It occurs in children and young adults who have had partial seizures for a long time. Under a microscope, the tumor has a specific pattern of bundles of nerve fibers.
Signs & symptoms
GARD doesn't list specific symptoms for this condition separately, but its summary describes this feature:
- Partial seizures over a long period
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 rare disease patient organizations for support
- 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.
Also known as: dnet; dnt; dysembryoplastic neuroepithelial neoplasm; dysembryoplastic neuroepithelial tumor (morphologic abnormality); dysembryoplastic neuroepithelial tumour (morphologic abnormality)
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Dysembryoplastic neuroepithelial tumor.
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