If you or your loved one recently received an ectodermal dysplasia diagnosis, you may have more questions than answers at first. How did this happen? Can our future children have it? Should I have other family members tested?
All of your questions are valid ones and normal to have following a diagnosis. The specialist best able to provide those answers and help you better understand ectodermal dyspalsia and how it expresses itself in your family is a genetic counselor.
Genetic counseling is in great demand as we learn more about our genes. It may take some time to get an appointment to see one.
The goal of genetic counseling is to help you learn more about the causes of ectodermal dysplasia and how they affect you. Here’s what you can expect at your first appointment. A genetic counselor will:
- Provide counseling about the diagnosis and the genetic basis of the condition
- Review the features, treatment, and management of the condition
- Provide information, support, and resources to the family
- Address psychosocial implications of the diagnosis for the person affected by ectodermal dysplasia and other family members
- Review family history and provide risk assessment
- Review genetic testing and future reproductive options
- Offer testing for other relatives/spouses if such testing exists for that particular ectodermal dysplasia.
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