Living with Williams syndrome
A developmental condition affecting learning, personality, facial features, and the heart and blood vessels.
Understanding Williams syndrome
It includes mild to moderate intellectual disability or learning problems, distinctive facial features, and heart and blood vessel problems. People often find visual-spatial tasks hard, such as puzzles, but tend to do well with spoken language, music, and learning by repetition. They often have outgoing, engaging personalities. Attention problems, anxiety, and phobias are common.
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Mild to moderate learning difficulty
- Narrowing of the main body artery (supravalvular aortic stenosis)
- Distinctive facial features
- Trouble with puzzles and drawing
- Anxiety and attention problems
- Dental 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, brain and nervous system specialists, eye disease specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Williams Syndrome Association and World Craniofacial Foundation 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); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Williams Syndrome Association, World Craniofacial 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 Williams Syndrome Association 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 says it is inherited in an autosomal dominant way. It says changes in genes (variants) cause it, and doesn't name a gene here.
Also known as: chromosome 7q11.23 deletion syndrome, 1.5- to 1.8-mb; deletion 7q11.23; fanconi schlesinger syndrome; monosomy 7q11.23; wbs; william syndrome
Patient organizations
- Williams Syndrome AssociationWilliams syndrome · United States
- Chromosome Disorder OutreachChromosome disorders · United States
- World Craniofacial FoundationCraniofacial anomalies · United States
- Children's Craniofacial AssociationCraniofacial anomalies · United States
- FACES: The National Craniofacial AssociationCraniofacial anomalies · United States
- myFaceCraniofacial anomalies · 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 Williams syndrome.
Explore research for Williams syndrome
Explore actively recruiting Williams syndrome studies with HealthSpark.
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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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