Living with Transient bullous dermolysis of the newborn
A rare skin blistering condition seen at birth that usually fades within the first one to two years of life.
Understanding Transient bullous dermolysis of the newborn
The blistering usually goes away within the first 6 to 24 months of life. It is noticed in the newborn period or infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blisters over the body
- Fragile skin
- Blisters in the mouth
- Poorly formed or missing nails
- Small white bumps (milia)
- Sunken scars (atrophic scars)
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.
- 3Consider genetic testing
Changes in COL7A1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
DEBRA of America 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: DEBRA of America
- 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 DEBRA 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
This condition is caused by changes in the COL7A1 gene. GARD lists both autosomal dominant and autosomal recessive inheritance.
Also known as: deb-bdn; deb, bullous dermolysis of the newborn; dystrophic epidermolysis bullosa, neonatal; epidermolysis bullosa dystrophica, neonatal form; self-improving deb; self-improving dystrophic epidermolysis bullosa
Patient organizations
- DEBRA of AmericaTransient bullous dermolysis of the newborn · United States
- Epidermolysis Bullosa Medical Research FoundationTransient bullous dermolysis of the newborn · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Transient bullous dermolysis of the newborn.
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