Living with Leukoencephalopathy with bilateral anterior temporal lobe cysts
A rare brain condition beginning in infancy with learning and movement delays, muscle stiffness, and cysts seen on MRI.
Understanding Leukoencephalopathy with bilateral anterior temporal lobe cysts
It is marked by intellectual disability, muscle stiffness (spasticity), and delayed movement skills. MRI shows cysts in the front of the temporal lobes on both sides and white matter changes. It begins in the first few months of life. Hearing loss and a small head have also been reported.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Intellectual disability
- Global developmental delay
- Absent speech
- Muscle stiffness in the legs (spasticity)
- Small head (microcephaly)
- Hearing loss (sensorineural)
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 genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
United Leukodystrophy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: United Leukodystrophy Foundation
- 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 United Leukodystrophy Foundation
- 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 cause is unknown, but an autosomal recessive pattern of inheritance has been suggested.
Also known as: leukoencephalopathy co-occurrent with bilateral anterior temporal lobe cysts
Patient organizations
- United Leukodystrophy FoundationLeukodystrophies · United States
Broader rare-disease groups
- 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 Leukoencephalopathy with bilateral anterior temporal lobe cysts.
Explore research for Leukoencephalopathy with bilateral anterior temporal lobe cysts
Explore actively recruiting Leukoencephalopathy with bilateral anterior temporal lobe cysts studies with HealthSpark.
Find actively recruiting studies for Leukoencephalopathy with bilateral anterior temporal lobe cysts with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Leukoencephalopathy with bilateral anterior temporal lobe cysts studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Leukoencephalopathy with bilateral anterior temporal lobe cysts
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Leukoencephalopathy with bilateral anterior temporal lobe cysts experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.