Living with Acute hemorrhagic leukoencephalitis
A rare, intense attack of swelling in the brain and spinal cord that can also cause bleeding in the brain.
Understanding Acute hemorrhagic leukoencephalitis
The attack damages myelin, the protective covering of nerve fibers. It may also cause bleeding in the brain, which can damage the white matter. Symptoms usually come on quickly.
Signs & symptoms
Symptoms vary from person to person. GARD's summary says they may include:
- Fever
- Stiff neck
- Tiredness (fatigue)
- Headache
- Nausea and vomiting
- Seizures
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.
- 4Connect with expert centers
Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Global Autoimmune Institute
- 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 Global Autoimmune Institute
- 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 exact cause is unclear. AHLE usually follows a viral or bacterial infection, or less often, vaccination for measles or rabies.
Also known as: acute haemorrhagic leucoencephalitis of weston hurst; acute hemorrhagic encephalomyelitis; acute hemorrhagic leukoencephalitis of weston hurst; acute necrotizing hemorrhagic leukoencephalitis; ahl; hurst's disease
Patient organizations
- Global Autoimmune InstituteAcute hemorrhagic leukoencephalitis · United States
You are more than your diagnosis
Perspectives from people navigating life with Acute hemorrhagic leukoencephalitis.
Explore research for Acute hemorrhagic leukoencephalitis
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