Help spread the word

About XLHED

XLHED (X-linked hypohidrotic ectodermal dysplasia) is a rare genetic disorder. It affects boys in the family, though girls may carry the XLHED gene. Some health concerns include:

• Hair, teeth, and sweat glands will not fully develop
• Early health problems that may endanger babies, such as risk of overheating due to the inability to sweat
• A greater chance of respiratory tract infections and skin problems
• Emotional stress and social pressures children who are affected by XLHED may experience due to differences
• Currently, no treatment exists—and lifelong care is needed to manage symptoms

Genetics & You

Genes tell our bodies how to grow, develop, and function. For some people, certain changes can happen in the body’s genetic information. These changes can result in the body growing, developing, and functioning differently than it should. Symptoms of HED or XLHED may result from these changes. Understanding the genetics of HED and XLHED is important to help:

• Manage healthcare needs
• Understand research and treatment options
• Learn how HED or XLHED may be passed on in your family

Genetics can be complicated, but you’re not alone. To find a genetic counselor near you visit: www.nsgc.org

Get Connected

Finding a community of people living through similar experiences that you are can have a tremendous impact on living with XLHED.

Ectodermal dysplasia advocacy groups can connect you to other families living with XLHED, provide valuable resources, and keep you up-to-date with ongoing research.

There are many ectodermal dysplasia groups around the world!