Living with Optic pathway glioma
A non-cancerous tumor along the optic nerve pathway that can affect vision, growth, and sleep, and is often linked to neurofibromatosis type 1.
Understanding Optic pathway glioma
It forms along the optic nerve, chiasm, tracts, and radiations. It may impair or take away vision and may cause symptoms from nearby brain areas, such as slowed growth and changes in sleep. It is often linked to neurofibromatosis type 1 (NF1). GARD lists onset as any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Reduced sharpness of vision
- Vision loss
- Quick, involuntary eye movements (nystagmus)
- Damage to the optic nerve (optic atrophy)
- Neurofibromas
- Slowed growth and sleep changes
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, cancer specialists, genetic specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Raymond A. Wood Foundation and Pituitary Network Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Raymond A. Wood Foundation, Pituitary Network Association
- 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 Raymond A. Wood Foundation and other patient organizations
- 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 changes in genes cause this condition. It is often linked to neurofibromatosis type 1 (NF1).
Also known as: glioma of optic tract; glioma of the optic tract; glioma of the visual pathway; glioma of visual pathway; optic tract glioma; visual pathway glioma
Patient organizations
- Raymond A. Wood FoundationOptic pathway glioma · United States
- Pituitary Network AssociationPituitary deficiencies · United States
You are more than your diagnosis
Perspectives from people navigating life with Optic pathway glioma.
Explore research for Optic pathway glioma
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- Recruiting studies from ClinicalTrials.gov
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- 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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