Living with Focal facial dermal dysplasia
A group of rare skin conditions with scar-like marks on the temples or near the ears, with facial differences in some types.
Understanding Focal facial dermal dysplasia
There are four types, FFDD I to IV. Types II and III may include facial differences, such as double or missing eyelashes, upward-slanting thin eyebrows, a flat nasal bridge, and a full upper lip. Types I and IV are rarely linked with problems outside the skin. It begins before or at birth.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes:
- Scar-like marks on the temples
- Scar-like marks in front of the ears
- Missing or double eyelashes (types II and III)
- Thin, upward-slanting eyebrows
- Flat nasal bridge and full upper lip
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
National Foundation for Ectodermal Dysplasias 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: National Foundation for Ectodermal Dysplasias
- 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 National Foundation for Ectodermal Dysplasias 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
Changes in genes cause it. It can be inherited in an autosomal dominant or autosomal recessive way.
Also known as: ffdd; ffdd - focal facial dermal dysplasia
Patient organizations
- National Foundation for Ectodermal DysplasiasFocal facial dermal dysplasia · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Focal facial dermal dysplasia.
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