Living with Alopecia-intellectual disability-hypergonadotropic hypogonadism syndrome
A rare condition with complete hair loss from birth, mild intellectual disability, and low sex hormone production.
Understanding Alopecia-intellectual disability-hypergonadotropic hypogonadism syndrome
People have complete hair loss from birth, mild intellectual disability, and hypergonadotropic hypogonadism, which means the ovaries or testes don't make enough sex hormones. Reported EEG (brain wave) tests were normal.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Total hair loss (alopecia totalis)
- Mild intellectual disability
- Low sex hormone production (hypogonadism)
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.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); 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 doesn't describe a cause for this condition yet.
Also known as: devriendt-vandenberghe-fryns 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 Alopecia-intellectual disability-hypergonadotropic hypogonadism syndrome.
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