Living with Renal hypodysplasia/aplasia 1
A rare condition in which the kidneys and urinary tract develop abnormally before birth, with kidneys that are small or missing.
Understanding Renal hypodysplasia/aplasia 1
One or both kidneys may be much smaller than expected or may not form at all. Some people also have blockages in the urinary tract. Different kidney problems can appear in different relatives of one family. GARD says it is hard to predict how it will affect any one person, even within a family.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. The summary describes these features:
- Small kidneys (hypoplasia)
- Kidneys that formed but developed abnormally (dysplasia)
- Missing kidney (renal aplasia)
- Blockages in the urinary tract
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 says the kidneys and urinary tract form differently before birth. Some related conditions are linked to specific gene changes, so different genetic causes are possible.
Also known as: rhda1; urogenital adysplasia, hereditary
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 Renal hypodysplasia/aplasia 1.
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