Living with Russell-Silver syndrome
A rare condition with slow growth before and after birth, feeding difficulties, and a small triangular face.
Understanding Russell-Silver syndrome
Babies usually have low birth weight and may have trouble feeding and gaining weight. The head grows normally, so it can look large for the body. Some people have one side of the body larger than the other. Low blood sugar, reflux, and vomiting are common. Some have delayed motor skills, speech problems, or learning disabilities.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Slow growth after birth
- Feeding difficulties and poor weight gain
- Acid reflux and constipation
- Small triangular face and downturned mouth
- Uneven growth of arms or legs
- Insulin resistance
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, brain and nervous system specialists, cancer specialists and eye disease specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Little People of America may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Brain and nervous system specialists (neurologists); Cancer specialists (oncologists); Eye disease specialists (ophthalmologists)
- Expert care
- Expert lists: Little People of America
- 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 Little People of America 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 autosomal dominant inheritance, so one changed copy of a gene can be enough. It does not name a gene in this record.
Also known as: russell silver syndrome; russell-silver dwarfism; russell's syndrome; silver russell dwarfism; silver russell syndrome; silver syndrome
Patient organizations
- Little People of AmericaRussell-Silver syndrome · United States
- Human Growth FoundationRussell-Silver syndrome · United States
- The MAGIC FoundationRussell-Silver syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Russell-Silver syndrome.
Explore research for Russell-Silver syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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