Overview
Severe disseminated cytomegalovirus (CMV) infection in immunocompetent patients is a rare and serious condition caused by the cytomegalovirus, a common member of the herpes virus family. While CMV infection is very widespread — most adults have been exposed to it at some point in their lives — the virus usually causes no symptoms or only mild illness in people with healthy immune systems. In rare cases, however, people with fully functioning immune systems can develop a severe, widespread (disseminated) form of the infection that affects multiple organs at the same time. This is what makes this condition unusual and classified as a rare disease. When the infection spreads throughout the body, it can damage the liver, lungs, gut, brain, eyes, and other organs. Patients may experience high fever, severe fatigue, liver inflammation, pneumonia, and gastrointestinal problems. The exact reason why some otherwise healthy people develop this severe form is not fully understood, but subtle immune differences or genetic factors may play a role. Treatment typically involves antiviral medications, most commonly ganciclovir or valganciclovir, which work to slow the virus and allow the body to recover. With prompt diagnosis and treatment, many patients improve, but the condition can be life-threatening if not caught and treated quickly. Because this disease is so rare in immunocompetent individuals, it is often diagnosed late, which makes awareness especially important.
Key symptoms:
High fever lasting more than a weekSevere tiredness and weaknessLiver inflammation (hepatitis) causing yellowing of the skin or eyesPneumonia or difficulty breathingAbdominal pain and diarrheaSwollen lymph nodesSkin rashConfusion or neurological changesVision problems or eye inflammationLow blood cell counts (anemia, low platelets)Muscle aches and joint painNausea and loss of appetite
Clinical phenotype terms (29)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
2 eventsLivtencity: FDA approved
Treatment of adults and pediatric patients (12 years of age and older and weighing at least 35 kg) with post-transplant cytomegalovirus (CMV) infection/disease that is refractory to treatment (with or without genotypic resistance) with ganciclovir, valganciclovir, cidofovir or foscarnet
CytoGam: FDA approved
#1) Attenuation of primary CMV disease associated with kidney transplant recipients who are seronegative for CMV and who receive a kidney from a CMV seropositve donor; #2) Prophylaxis of CMV disease associated transplantation of kidney (all other), lung, liver, pancreas and heart.
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
2 availableLivtencity
Treatment of adults and pediatric patients (12 years of age and older and weighing at least 35 kg) with post-transplant cytomegalovirus (CMV) infection/disease that is refractory to treatment (with or…
Treatment of adults and pediatric patients (12 years of age and older and weighing at least 35 kg) with post-transplant cytomegalovirus (CMV) infection/disease that is refractory to treatment (with or without genotypic resistance) with ganciclovir, valganciclovir, cidofovir or foscarnet
CytoGam
#1) Attenuation of primary CMV disease associated with kidney transplant recipients who are seronegative for CMV and who receive a kidney from a CMV seropositve donor; #2) Prophylaxis of CMV disease a…
#1) Attenuation of primary CMV disease associated with kidney transplant recipients who are seronegative for CMV and who receive a kidney from a CMV seropositve donor; #2) Prophylaxis of CMV disease associated transplantation of kidney (all other), lung, liver, pancreas and heart.
Clinical Trials
View all trials with filters →No actively recruiting trials found for Severe disseminated cytomegalovirus infection in immunocompetent patients at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Severe disseminated cytomegalovirus infection in immunocompetent patients.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
1 resourcesTravel Grants
No travel grants are currently matched to Severe disseminated cytomegalovirus infection in immunocompetent patients.
Community
No community posts yet. Be the first to share your experience with Severe disseminated cytomegalovirus infection in immunocompetent patients.
Start the conversation →Latest news about Severe disseminated cytomegalovirus infection in immunocompetent patients
No recent news articles for Severe disseminated cytomegalovirus infection in immunocompetent patients.
Follow this condition to be notified when news becomes available.
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Why did I develop severe CMV infection if my immune system is supposed to be healthy — could I have an underlying immune problem?,Which organs have been affected, and how will we monitor them for recovery?,How long will I need antiviral treatment, and what are the side effects I should watch for?,What signs should prompt me to go to the emergency room during my recovery?,Is there a risk that CMV could reactivate in the future, and how would we manage that?,Should my family members be tested or take any precautions?,Are there any clinical trials or research studies I could participate in to help understand why this happened to me?
Common questions about Severe disseminated cytomegalovirus infection in immunocompetent patients
What is Severe disseminated cytomegalovirus infection in immunocompetent patients?
Severe disseminated cytomegalovirus (CMV) infection in immunocompetent patients is a rare and serious condition caused by the cytomegalovirus, a common member of the herpes virus family. While CMV infection is very widespread — most adults have been exposed to it at some point in their lives — the virus usually causes no symptoms or only mild illness in people with healthy immune systems. In rare cases, however, people with fully functioning immune systems can develop a severe, widespread (disseminated) form of the infection that affects multiple organs at the same time. This is what makes thi
How is Severe disseminated cytomegalovirus infection in immunocompetent patients inherited?
Severe disseminated cytomegalovirus infection in immunocompetent patients follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
What treatment and support options exist for Severe disseminated cytomegalovirus infection in immunocompetent patients?
2 patient support programs are currently tracked on UniteRare for Severe disseminated cytomegalovirus infection in immunocompetent patients. See the treatments and support programs sections for copay assistance, eligibility, and contact details.