Living with Hidrotic ectodermal dysplasia, Halal type
A very rare genetic condition affecting hair, nails, and learning, with other features that can vary.
Understanding Hidrotic ectodermal dysplasia, Halal type
People have sparse hair, absent eyebrows and eyelashes, and nail differences. Intellectual disability is part of the condition, while teeth and sweating are normal. Other features can vary, such as mild hearing loss or prominent ears. Only four people from one family have been described, and males and females were equally affected. It may be seen in newborns or infants.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Absent eyebrows and eyelashes
- Sparse scalp and body hair
- Nail differences (nail dysplasia)
- Intellectual disability
- Receding chin (retrognathia)
- Multiple café-au-lait (light brown) spots
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 brain and nervous system 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.
- 4Connect with expert centers
National Foundation for Ectodermal Dysplasias may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); 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 (also called variants) cause this condition. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: ectodermal dysplasia with skin anomalies and intellectual disability; ectodermal dysplasia with skin anomaly and intellectual disability; halal setton wang syndrome; halal-setton-wang syndrome; hidrotic ectodermal dysplasia halal type; trichodysplasia-abnormal dermatoglyphics-intellectual disability syndrome
Patient organizations
- National Foundation for Ectodermal DysplasiasHidrotic ectodermal dysplasia, Halal type · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Hidrotic ectodermal dysplasia, Halal type.
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