Living with Multinodular goiter-cystic kidney-polydactyly syndrome
A very rare syndrome with a thyroid gland that has many nodules, cysts in the kidneys, and extra fingers or toes.
Understanding Multinodular goiter-cystic kidney-polydactyly syndrome
GARD describes it as the combination of multinodular goiter (an enlarged thyroid with many nodules), cystic kidney disease, and differences in the fingers and toes. Signs are seen during pregnancy or in the newborn period.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Enlarged thyroid with many nodules (multinodular goiter)
- Cysts in the kidneys
- Extra little finger
- Extra toe on the thumb side
- Finger-like thumb (triphalangeal thumb)
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Genetic specialists (geneticists)
- 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
Changes in genes (also called variants) cause this syndrome. It is autosomal dominant, which means a changed copy of the gene from one parent can be enough to cause it.
Also known as: daneman davy mancer syndrome; daneman-davy-mancer syndrome; mng/crd/da; multinodular goiter, cystic kidney, polydactyly syndrome; multinodular goiter/cystic renal disease/digital anomalies; thyroid-renal-digital anomalies
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 Multinodular goiter-cystic kidney-polydactyly syndrome.
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