Living with Hypohidrotic ectodermal dysplasia-hypothyroidism-ciliary dyskinesia syndrome
A rare condition, also called ANOTHER syndrome, with hair loss, nail changes, reduced sweating, underactive thyroid, and repeated chest infections.
Understanding Hypohidrotic ectodermal dysplasia-hypothyroidism-ciliary dyskinesia syndrome
It involves hair loss, nail dystrophy, eye problems, an underactive thyroid, reduced sweating, freckles, bowel disease, and breathing infections from ciliary dyskinesia, in which tiny hairs in the airways don't move well. The name ANOTHER comes from these features. It begins in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hair loss (alopecia)
- Poorly formed nails
- Reduced sweating
- Underactive thyroid (hypothyroidism)
- Repeated respiratory infections
- Short height
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, hormone 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); Hormone specialists (endocrinologists); 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
GARD says the gene that causes this condition is currently unknown. It is thought to be inherited in an autosomal recessive way.
Also known as: alopecia, nail dystrophy, ophthalmic complications, thyroid dysfunction, hypohidrosis, ephelides, enteropathy and respiratory tract infections; another (alopecia, nail dystrophy, ophthalmic complications, thyroid dysfunction, hypohidrosis, ephelides, enteropathy, respiratory tract infection) syndrome; another syndrome; hedh syndrome; hypohidrotic ectodermal dysplasia, hypothyroidism, ciliary dyskinesia syndrome
Patient organizations
- National Foundation for Ectodermal DysplasiasHypohidrotic ectodermal dysplasia-hypothyroidism-ciliary dyskinesia syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
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