Living with Dislocation of the hip-dysmorphism syndrome
A rare syndrome present from birth with both hips out of joint, distinct facial features, and very flexible joints.
Understanding Dislocation of the hip-dysmorphism syndrome
Facial features include a flat mid-face, wide-set eyes, puffy eyes, a broad nasal bridge, and a carp-shaped mouth. Joints are very flexible. Heart defects, knee dislocation, groin hernia, and urine backflow have also been reported. GARD notes no further descriptions since 1995.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hip dislocation present from birth
- Very flexible joints
- Heart differences
- Distinct facial features
- Palate differences
- Fingers that deviate to the side
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 genetic specialists.
- 3Consider genetic testing
Changes in TRIM33 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
- 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 rare disease patient organizations for support
- 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 TRIM33 gene cause this condition. It is autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: collins-pope syndrome; dislocation of hip, congenital, with hyperextensibility of fingers and facial dysmorphism
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Dislocation of the hip-dysmorphism syndrome.
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