Living with Tricho-oculo-dermo-vertebral syndrome
A rare genetic condition with very little information in GARD so far.
Understanding Tricho-oculo-dermo-vertebral syndrome
GARD lists autosomal recessive inheritance for this condition. GARD's Information Specialists can help people find information and resources.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
National Foundation for Ectodermal Dysplasias may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: National Foundation for Ectodermal Dysplasias
- 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 National Foundation for Ectodermal Dysplasias
- 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 doesn't describe a cause for this condition yet. It lists autosomal recessive inheritance, which means a child inherits a changed copy of a gene from each parent.
Also known as: alves syndrome; alves-dos santos-castelo syndrome; arthrogryposis and ectodermal dysplasia; ectodermal dysplasia-cataracts-kyphoscoliosis syndrome; todv syndrome; trichooculodermovertebral syndrome
Patient organizations
- National Foundation for Ectodermal DysplasiasTricho-oculo-dermo-vertebral syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Tricho-oculo-dermo-vertebral syndrome.
Explore research for Tricho-oculo-dermo-vertebral syndrome
Explore actively recruiting Tricho-oculo-dermo-vertebral syndrome studies with HealthSpark.
Find actively recruiting studies for Tricho-oculo-dermo-vertebral 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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