Living with Chilblain lupus
A rare long-lasting skin condition with red or purple bumps on the fingers and toes that get worse in cold, damp weather.
Understanding Chilblain lupus
It causes red or purple-colored bumps and patches, first itchy and later painful, on the hands and feet, especially the tops of the fingers and toes. Cold and damp conditions make it worse, and cracks and sores may occur. Some people also have discoid lupus patches elsewhere, and a few progress to systemic lupus.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Red bumps on the skin
- Swollen fingers
- Itching on the hands
- Skin sores (ulcers)
- Thickened skin (hyperkeratosis)
- Butterfly-shaped facial rash (malar rash)
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.
- 4Connect with expert centers
Vasculitis Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Vasculitis Foundation
- 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 Lupus Foundation of America and other patient organizations
- 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 genes cause this condition, but doesn't list a specific gene or how it is inherited. Cold and damp conditions make symptoms worse.
Also known as: chilblain lupus erythematosus; chle; hutchinson lupus; lupus pernio; sarcoidosis, lupus pernio type
Patient organizations
- Lupus Foundation of AmericaChilblain lupus · United States
- Vasculitis FoundationChilblain lupus · United States
- Lupus Research AllianceChilblain lupus · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Chilblain lupus.
Explore research for Chilblain lupus
Explore actively recruiting Chilblain lupus studies with HealthSpark.
Find actively recruiting studies for Chilblain lupus 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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