Living with Dowling-Degos disease
A skin condition that causes lacy, dark patches in body folds like the armpits and groin, usually beginning in late childhood or the teens.
Understanding Dowling-Degos disease
Dark skin changes usually first appear in the armpits and groin and can spread to other folds. They typically cause no health problems. Some people also have blackhead-like spots, acne-like bumps around the mouth, pitted scars, or cysts on the scalp. Rarely there is itching or burning. Changes usually begin in late childhood or adolescence and tend to increase over time.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Lacy dark patches of skin (reticulate hyperpigmentation)
- Freckle-like spots in the groin
- Thickened skin (hyperkeratosis)
- Skin changes on the neck
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 changes in a person's genes cause this condition. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: dark dot disease; dowling-degos disease type 1; reticular pigment anomaly of flexures
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 Dowling-Degos disease.
Explore research for Dowling-Degos disease
Explore actively recruiting Dowling-Degos disease studies with HealthSpark.
Find actively recruiting studies for Dowling-Degos disease 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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