Living with Malignant atrophic papulosis
A rare blood vessel disorder, also called Degos disease, that can cause white skin spots and affect the gut and other organs.
Understanding Malignant atrophic papulosis
Symptoms depend on how much and where blood vessels are affected. Some people have only skin involvement, with porcelain-white spots. Others have more widespread disease. It is described in adults.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Small raised skin bumps (papules)
- Thinning of the skin (atrophy)
- Abdominal pain
- Nausea and vomiting
- Bleeding in the digestive tract
- Weight loss and tiredness
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 autoimmune and inflammatory disease specialists, 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
- autoimmune and inflammatory disease specialists (rheumatologists); 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 the cause is currently unknown. The record lists an autosomal dominant inheritance pattern, which means a change in one copy of a gene can be enough to cause a condition.
Also known as: degos disease; degos' disease; kohlmeier-degos disease; kohlmeier-degos syndrome; kohlmeier-degos-delort-tricort syndrome; köhlmeier-degos disease
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 Malignant atrophic papulosis.
Explore research for Malignant atrophic papulosis
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