Living with Embryonal tumor with multilayered rosettes
A rare brain and nervous system tumor that mostly affects children in the first two years of life.
Understanding Embryonal tumor with multilayered rosettes
It shows one of three patterns under the microscope. The tumors usually have a change in the C19MC region or, rarely, a DICER1 change, and are WHO grade IV. They are mostly inside the skull, rarely in the spinal cord. They often cause signs of raised pressure inside the head, and sometimes seizures or other nerve signs. Most cases happen in children during the first two years of life.
Signs & symptoms
GARD doesn't list a separate symptom list for this condition, but the summary describes these features:
- Signs of raised pressure inside the head
- Seizures in some people
- Focal neurological signs in some people
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 says the tumors typically have a C19MC alteration or, rarely, a DICER1 mutation.
Also known as: embryonal neoplasm with multilayered rosettes; etmr - embryonal tumor with multilayered rosettes
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 Embryonal tumor with multilayered rosettes.
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