Living with Encephalitis due to human herpesvirus 6 infection
Inflammation of the brain caused by human herpesvirus 6, mostly in people with weakened immune systems or after certain transplants.
Understanding Encephalitis due to human herpesvirus 6 infection
People who have had an allogeneic hematopoietic cell transplant are at higher risk, and so may be people with immune system disorders. Symptoms vary but often include confusion, trouble learning new information, short-term memory loss, and seizures. Diagnosis often involves a lumbar puncture, virus testing, and MRI. An EEG may be advised if seizures are suspected.
Signs & symptoms
GARD doesn't list a separate symptom list for this condition, but the summary describes these features:
- Confusion
- Trouble learning new information (anterograde amnesia)
- Short-term memory loss
- 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.
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 HHV-6 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
It is caused by infection with human herpesvirus 6. The risk is higher after an allogeneic hematopoietic cell transplant or with immune system disorders.
Also known as: encephalitis caused by human herpesvirus 6 infection; hhv-6 encephalitis
Patient organizations
- HHV-6 FoundationEncephalitis due to human herpesvirus 6 infection · United States
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