Living with Hidrotic ectodermal dysplasia, Christianson-Fourie type
A rare genetic condition affecting hair and nails, along with heart rhythm changes, that can be seen from infancy.
Understanding Hidrotic ectodermal dysplasia, Christianson-Fourie type
It is a form of ectodermal dysplasia, a group of conditions affecting skin, hair, and nails. People have sparse scalp hair and eyelashes, and eyebrows that are absent or sparse. Nails are thickened and may lift at the tip. Heart rhythm changes, such as a fast or slow heartbeat, can also occur. It may be noticed in newborns or infants.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Sparse scalp hair
- Sparse eyelashes
- Absent eyebrows
- Poorly formed nails (nail dystrophy)
- Overgrown, curved toenails
- Limited armpit and pubic hair
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 (also called variants) cause this condition. It is inherited in an autosomal dominant way, meaning one changed copy of the gene can be enough to cause it.
Also known as: christianson fourie syndrome; christianson-fourie syndrome; hidrotic ectodermal dysplasia christianson fourie type
Patient organizations
- National Foundation for Ectodermal DysplasiasHidrotic ectodermal dysplasia, Christianson-Fourie 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, Christianson-Fourie type.
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