Living with Syndactyly-telecanthus-anogenital and renal malformations syndrome
A very rare condition with joined fingers or toes, wide-set eyes, and differences in the anus, genitals, and kidneys.
Understanding Syndactyly-telecanthus-anogenital and renal malformations syndrome
STAR stands for its main signs: syndactyly (joined fingers or toes), telecanthus (wide space between the inner eye corners), anogenital differences, and renal (kidney) differences. Some people also have other bone differences, hearing loss, seizures, eye problems, and spinal cord differences. Only females with STAR syndrome have been reported.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Joined toes
- Wide-set inner eye corners (telecanthus)
- Anus or genital differences
- Kidney differences
- Short stature
- Heart wall differences
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 bone and joint specialists, digestive system specialists and genetic specialists.
- 3Consider genetic testing
Changes in CCNQ are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Digestive system specialists (gastroenterologists); 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 National Kidney 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
Changes in the CCNQ (also called FAM58A) gene cause this condition, often by a deletion. It is X-linked dominant, meaning the gene is on the X chromosome.
Also known as: star; star (syndactyly, telecanthus, anogenital, renal malformation) syndrome; star syndrome; star syndrome, x-linked dominant; syndactyly with renal and anogenital malformations; syndactyly, telecanthus, anogenital and renal malformation syndrome
Patient organizations
- National Kidney FoundationSyndactyly-telecanthus-anogenital and renal malformations syndrome · United States
- Pull-thru NetworkSyndactyly-telecanthus-anogenital and renal malformations syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Syndactyly-telecanthus-anogenital and renal malformations syndrome.
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