Living with Ulerythema ophryogenesis
A rare skin condition with red, rough bumps on the cheeks and outer eyebrows that often improves with age.
Understanding Ulerythema ophryogenesis
It mainly affects children and young adults. The bumps appear on the cheeks and outer parts of the eyebrows. They can spread to the scalp, ears, and forehead, and rarely to the limbs. GARD says symptoms fade with age, although the outer eyebrows can be lost. There is no particular treatment, and people should avoid sun exposure without UV protection.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Red, rough bumps on the cheeks (keratosis pilaris)
- Redness of the cheeks
- Thin or missing outer eyebrows
- Dry skin
- Skin thinning (atrophy)
- Raised, thick hair follicles
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
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
GARD says many cases occur on their own with no family history, and autosomal dominant inheritance has also been reported. It doesn't name a specific gene.
Also known as: ulerythema ophryogenes; ulerythema ophryogenes with multiple congenital anomalies
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 Ulerythema ophryogenesis.
Explore research for Ulerythema ophryogenesis
Explore actively recruiting Ulerythema ophryogenesis studies with HealthSpark.
Find actively recruiting studies for Ulerythema ophryogenesis 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 Ulerythema ophryogenesis 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 Ulerythema ophryogenesis
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 Ulerythema ophryogenesis 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.