International Ectodermal Dysplasias Awareness Day Date in the current year: February 20, 2025

During early embryonic development, around the third week after fertilization, three layers of cells form in the embryo: the ectoderm, the mesoderm, and the endoderm. Each of these layers then gives rise to a set of organs and tissues. The ectoderm develops into the skin, hair, nails, salivary glands, mucous glands, sebaceous glands, tooth enamel, eyes, and the nervous system.

Spontaneous or inherited mutations in certain genes can affect the development of structures that arise from the ectoderm, resulting in various abnormalities. These abnormalities are collectively known as ectodermal dysplasias (ED). It is an umbrella term for more than 180 specific syndromes, each with its own genetic causes and symptoms.

ED can affect two or more of the following structures: hair, nails, skin, sweat glands, salivary glands, and teeth. Typical symptoms, which can vary depending on the type of ED and even between patients who have the same type of ED, include:

• Hair: fine, brittle, sparse, or absent hair; the condition can affect head, facial, and body hair, as well as eyebrows and eyelashes.
• Nails: thin, brittle, ridged, poorly formed nails, prone to splitting and breaking.
• Skin: dry and thin skin, hyperkeratosis, dark circles around the eyes.
• Sweat glands: reduced or absent sweat production.
• Salivary glands: dry mouth, accelerated tooth decay due to lack of saliva.
• Teeth: thin or soft enamel, missing teeth, unusually shaped teeth, widely spaced teeth, delayed tooth eruption (late teething).

ED can also affect the tear glands, leading to reduced tear production, dry eyes, and susceptibility to eye infections; the nasal glands, leading to dry nasal passages and associated respiratory problems; as well as hearing, facial bones, and overall facial structure. Some people with ED have cleft lip or palate. Due to the large number of ED subtypes and the wide variety of symptoms, ED is difficult to diagnose.

Since there is no cure for the condition, treatment usually focuses on symptom management and involves a team of professionals working together. Treatment methods depend on the specific subtype of ED, the severity of the symptoms, and the child’s age (some treatments cannot be done until the child has stopped growing). They may include dentures, topical treatments for the skin and nails, artificial tears for dry eyes, nasal irrigation, hearing and speech therapy, etc.

International Ectodermal Dysplasias Awareness Day was created in 2020 to raise awareness of these rare disorders and support patients affected by ectodermal dysplasias and their families. You can get involved by learning more about ectodermal dysplasias and sharing what you’ve learned with others, wearing blue to start conversations, donating to an organization that supports patients affected by ectodermal dysplasias, and spreading the word about the awareness day on social media.