Living with Congenital rubella syndrome
Birth differences that can occur when a mother has rubella (German measles) during pregnancy, affecting hearing, eyes, and heart.
Understanding Congenital rubella syndrome
It occurs when the virus affects the developing baby in the first 3 months of pregnancy. After the fourth month, infection is less likely to cause harm. The most common problems are hearing loss, eye problems (cataract, glaucoma, retina changes), and heart problems. It is much less common since the rubella vaccine was developed.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hearing loss from inner ear nerve damage
- Cloudy lens of the eye (cataract)
- Glaucoma
- Heart defects, such as holes in the heart walls
- Small head (microcephaly)
- Intellectual disability
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, eye disease specialists and seizure and epilepsy specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Epilepsy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Epilepsy 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 Epilepsy 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 the rubella virus passing from a mother with rubella during pregnancy to her developing baby. GARD says people who are not vaccinated and have not had rubella are at risk of infection.
Also known as: congenital rubella; crs; fetal rubella syndrome; foetal rubella syndrome; gestational rubella syndrome; gregg's syndrome
Patient organizations
- Epilepsy FoundationEpilepsy · 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 Congenital rubella syndrome.
Explore research for Congenital rubella syndrome
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