Living with Gordon syndrome
An inherited condition with stiff joints in the hands, feet, and limbs, often with clubfoot and cleft palate, but usually normal intelligence.
Understanding Gordon syndrome
People can be born with several fingers fixed in a bent position (camptodactyly), clubfoot, and a cleft palate. Joints are often very stiff or can't move. Intelligence is usually normal. Range and severity vary. It is noticed during pregnancy or in the newborn period, and diagnosed by exam and genetic testing.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fingers fixed in a bent position (camptodactyly)
- Clubfoot
- Cleft or high palate
- Stiff joints
- Decreased muscle mass
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, ear, nose, and throat specialists and genetic specialists.
- 3Consider genetic testing
Changes in PIEZO2 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Arthrogryposis Multiplex Congenita Support Inc. and World Craniofacial Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Ear, nose, and throat specialists (otolaryngologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Arthrogryposis Multiplex Congenita Support Inc., 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 Arthrogryposis Multiplex Congenita Support Inc. 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 PIEZO2 gene cause this condition. It can be inherited in an autosomal dominant way, which means one changed copy of the gene is enough.
Also known as: arthrogryposis multiplex congenita, distal, type iia; camptodactyly-cleft palate-clubfoot syndrome; camptodactyly, cleft palate, and clubfoot; camptodactyly, cleft palate, clubfoot syndrome; da3; distal arthrogryposis type 3
Patient organizations
- Arthrogryposis Multiplex Congenita Support Inc.Gordon syndrome · 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
You are more than your diagnosis
Perspectives from people navigating life with Gordon syndrome.
Explore research for Gordon syndrome
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