Living with Hereditary acrokeratotic poikiloderma, Weary type
A rare inherited skin condition with blisters and rash in infancy, later skin changes and rough bumps on the hands and feet.
Understanding Hereditary acrokeratotic poikiloderma, Weary type
Babies develop small blisters on the hands and feet and a widespread eczema-like rash. Both clear up on their own during childhood. Over time the skin slowly develops patches of color change and thinning (poikiloderma), except on the face, scalp, and ears. Rough bumps (keratotic papules) form on the hands, feet, elbows, and knees, starting in early childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blisters on the skin
- Eczema-like rash
- Rough skin bumps (papules)
- Patchy darker or lighter skin
- Open skin sores
- Bleeding or inflamed gums
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 genes (also called variants) cause this condition. It doesn't list the specific gene or inheritance pattern.
Also known as: congenital poikiloderma with bullae, weary type; hereditary acrokeratotic poikiloderma; weary syndrome
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 Hereditary acrokeratotic poikiloderma, Weary type.
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