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.

Learn more about prenatal, pediatric and genetic counseling, questions you might ask a genetic counselor, and what you can do to prepare for the appointment.

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5 comments on “Genetic Counseling Helps Make Sense of Ectodermal Dysplasia”

  1. 1
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    Tips for Finding a Doctor or Dentist | National Foundation for Ectodermal Dysplasias on September 27, 2016

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  4. 4
    Lynne Walters on June 4, 2018

    My daughter needs help finding a dentist to replace her baby teeth implants she had when she was 12.The dentist she use to visit said she has to pay a small fortune as it’s classed as cosmetic.Also

    1. 5
      Jodi Edgar Reinhardt on June 5, 2018

      Hi, Lynne. Here’s a list of tips to help your daughter find a dentist: https://www.nfed.org/blog/tips-for-finding-a-doctor-or-dentist/. We also offer a network of Dental Treatment Centers she may consider: https://www.nfed.org/treat/dental-treatment-options/dental-treatment-centers/. It’s true that dental care can be expensive and insurance often denies it as cosmetic. However, we do offer resources and support to help you be successful in getting insurance coverage. It will take work and dedication. Learn more about how we can help through our Insurance Assistance Program here: https://www.nfed.org/treat/insurance-assistance-program/. HOpe this helps. Feel free to call our office any time for additional assistance at 618-566-2020. Jodi, NFED Director of Marketing and Communications

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