Living with Congenital posterior urethral valve
A rare condition in boys present before birth in which a blockage in the urethra makes it hard to empty the bladder.
Understanding Congenital posterior urethral valve
It is a blockage of the lower urinary tract that forms before birth and affects the male bladder. It can lead to kidney swelling (hydronephrosis), urine backing up toward the kidneys (vesicoureteral reflux), repeated urinary tract infections, and chronic kidney disease. GARD lists onset at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blocked bladder outlet
- Swollen kidneys (hydronephrosis)
- Urine flowing backward (vesicoureteral reflux)
- Frequent urinary tract infections
- Chronic kidney disease
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 genetic specialists, kidney specialists and urinary and male reproductive system specialists.
- 3Consider genetic testing
Changes in BNC2 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Fetal Health Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Kidney specialists (nephrologists); Urinary and male reproductive system specialists (urologists)
- Expert care
- Expert lists: Fetal Health 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 Fetal Health Foundation and other patient organizations
- 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 lists the BNC2 gene. Inheritance can be autosomal recessive (a changed copy from each parent) or X-linked.
Also known as: congenital obstructing posterior urethral membranes; congenital posterior urethral valves; copum; posterior urethral valve; posterior urethral valves; puv
Patient organizations
- Fetal Health FoundationCongenital posterior urethral valve · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital posterior urethral valve.
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