Living with Wooly hair-hypotrichosis-everted lower lip-outstanding ears syndrome
GARD doesn't have detailed information on this condition yet.
Understanding Wooly hair-hypotrichosis-everted lower lip-outstanding ears syndrome
Its name points to woolly hair, thin hair, a turned-out lower lip, and prominent ears. GARD says its 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 lists autosomal recessive inheritance, meaning a child inherits a changed gene copy from each parent. It doesn't name a gene.
Also known as: salamon syndrome; salamon's syndrome; woolly hair, hypotrichosis, everted lower lip, and outstanding ears
Patient organizations
- National Foundation for Ectodermal DysplasiasWooly hair-hypotrichosis-everted lower lip-outstanding ears syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Wooly hair-hypotrichosis-everted lower lip-outstanding ears syndrome.
Explore research for Wooly hair-hypotrichosis-everted lower lip-outstanding ears syndrome
Explore actively recruiting Wooly hair-hypotrichosis-everted lower lip-outstanding ears syndrome studies with HealthSpark.
Find actively recruiting studies for Wooly hair-hypotrichosis-everted lower lip-outstanding ears 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Wooly hair-hypotrichosis-everted lower lip-outstanding ears syndrome studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Wooly hair-hypotrichosis-everted lower lip-outstanding ears syndrome
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Wooly hair-hypotrichosis-everted lower lip-outstanding ears syndrome experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.