Living with Congenital membranous nephropathy due to maternal anti-neutral endopeptidase alloimmunization
A rare kidney condition in newborns, caused by the mother's immune response, that affects the kidneys' filters.
Understanding Congenital membranous nephropathy due to maternal anti-neutral endopeptidase alloimmunization
It is a disease of the kidneys' tiny filters (glomeruli). Babies are born with severe kidney failure and nephrotic syndrome, a kidney problem in which the kidneys leak protein. It is linked to the mother's immune system reacting against a protein called neutral endopeptidase (NEP). GARD says it improves rapidly in the first weeks of life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Nephrotic syndrome
- Kidney failure (renal insufficiency)
- Inflammation of the kidney filters (glomerulonephritis)
- Deposits in the kidney filters (glomerular deposits)
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 and kidney specialists.
- 3Consider genetic testing
Changes in MME 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
Allo Hope Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Kidney specialists (nephrologists)
- Expert care
- Expert lists: Allo Hope 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 Allo Hope 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 changes in the MME gene and autosomal recessive inheritance, meaning a child inherits a changed copy of the gene from each parent. The condition is linked to the mother's immune reaction against the NEP protein.
Also known as: alloimmune neonatal renal disease; congenital membranous nephropathy due to fetomaternal anti-neutral endopeptidase alloimmunization; fetomaternal alloimmunization with antenatal glomerulopathies; fmaig; neonatal glomerulopathy due to neprilysin alloimmunization; neonatal membranous glomerulopathy with maternal nep deficiency
Patient organizations
- Allo Hope FoundationCongenital membranous nephropathy due to maternal anti-neutral endopeptidase alloimmunization · 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 membranous nephropathy due to maternal anti-neutral endopeptidase alloimmunization.
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