Living with Hecht syndrome
A genetic condition that makes joints, muscles, and the mouth less able to move fully, with short stature.
Understanding Hecht syndrome
It is a type of distal arthrogryposis (joint stiffness that mainly affects the hands and feet). People may also have mild foot differences and be moderately short in height. Mouth movement can be limited, which can make it hard to open the mouth wide (trismus). It begins in the newborn period or infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Limited movement in the joints
- Differences in the muscles
- Short stature
- Trouble opening the mouth fully (trismus)
- Mild foot 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 and genetic specialists.
- 3Consider genetic testing
Changes in MYH8 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); 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 FACES: The National Craniofacial Association
- 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
Hecht syndrome is caused by changes in the MYH8 gene. It is autosomal dominant, which means one changed copy of the gene is enough to cause the condition.
Also known as: da7; distal arthrogryposis type 7; dutch kentucky syndrome; dutch-kentucky syndrome; hecht beals syndrome; hecht-beals syndrome
Patient organizations
- FACES: The National Craniofacial AssociationHecht syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Hecht syndrome.
Explore research for Hecht syndrome
Explore actively recruiting Hecht syndrome studies with HealthSpark.
Find actively recruiting studies for Hecht syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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