Living with Idiopathic disseminated cytomegalovirus infection
A rare viral illness in which cytomegalovirus spreads to many organs in people with healthy immune systems.
Understanding Idiopathic disseminated cytomegalovirus infection
It can involve the brain, lungs, liver, and heart, among others. It causes strong whole-body symptoms in people with healthy immune systems. It can happen at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fever
- Abdominal pain
- Nausea and vomiting
- Weight loss and poor appetite
- Liver inflammation (hepatitis)
- Lung inflammation (pneumonia)
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 describes this as an infection with cytomegalovirus that spreads through the body. It doesn't list a genetic cause.
Also known as: idiopathic disseminated cmv infection; severe disseminated cmv infection in immunocompetent patients; severe disseminated cytomegalovirus infection in immunocompetent patients
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 Idiopathic disseminated cytomegalovirus infection.
Explore research for Idiopathic disseminated cytomegalovirus infection
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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