Living with Desmoplastic infantile ganglioglioma
A rare brain tumor in infants, usually in the front or side of the brain, with rapid head growth and a bulging soft spot.
Understanding Desmoplastic infantile ganglioglioma
It is usually diagnosed before 18 months of age, and most infants have symptoms for only a short time. Seizures are not common. A bulging fontanelle (soft spot), fast head growth, vomiting, and a sunset sign are usually seen.
Signs & symptoms
GARD doesn't list a symptom list. Based on its summary, features include:
- Bulging soft spot (fontanelle)
- Rapid head growth
- Vomiting
- Eyes that look downward (sunset sign)
- Seizures (not common)
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.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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: dig
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 Desmoplastic infantile ganglioglioma.
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