Living with Familial isolated trichomegaly
A rare genetic condition with extra-long eyelashes and sometimes extra hair on the face and body.
Understanding Familial isolated trichomegaly
The eyelash hairs grow for longer than usual, and the long lashes may irritate the cornea (the clear front of the eye). Some people also have extra hair on the eyebrows, cheeks, forehead, chest, arms, or legs. It is present from birth.
Signs & symptoms
GARD doesn't list specific symptoms for this condition. Its summary describes:
- Extremely long eyelashes
- Eye (corneal) irritation
- Extra hair on eyebrows, cheeks, forehead
- Extra hair on chest, arms, legs
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 and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in FGF5 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); Skin, hair, and nail specialists (dermatologists)
- 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 Children's Skin Disease Foundation
- 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 FGF5 gene cause it. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent.
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- 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 Familial isolated trichomegaly.
Explore research for Familial isolated trichomegaly
Explore actively recruiting Familial isolated trichomegaly studies with HealthSpark.
Find actively recruiting studies for Familial isolated trichomegaly 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 Familial isolated trichomegaly 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 Familial isolated trichomegaly
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 Familial isolated trichomegaly 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.