When you have a rare genetic disorder like ectodermal dysplasia, it’s possible that you will know more about your condition than a doctor or dentist. We know that it can be frustrating for you when you are the one seeking answers. With thousands of rare disorders, it’s not reasonable to assume a care provider will know about all of them. But, it is reasonable to expect that they would be willing to learn more or research the condition in order to help you.

Help your care provider by sharing information about your experience. Also, consider taking these resources to your first visit.

  • An NFED Brochure – This will provide your care provider with a quick overview of the ectodermal dysplasias, the programs we offer and our contact information. We are always happy to answer their questions or connect them with other physicians or dentists who have treated the conditions.
  • A Family Guide to the Ectodermal Dysplasias – This booklet goes into more depth about the typical symptoms and their treatments in the ectodermal dysplasias. It covers skin, hair, teeth, nails, sweat glands, eyes, ears, nose, throat and genetics.
  • Parameters of Oral Health Care for Ectodermal Dysplasias – This is a comprehensive and wonderful resource for any kind of dentist treating ectodermal dysplasia. It provides guidelines for treatment at various ages.
  • You might also take applicable articles from our library. We have numerous articles that go into more detail on how to treat the various symptoms. Download and print the articles that apply to your situation.

It’s also useful to bring the following:

  • A letter of diagnosis, if you have one
  • Genetic test results
  • Any other medical reports you may have
  • Pen and paper to take notes
  • A list of all questions you have
  • A book or toy to entertain your child if he or she is with you
  • Snacks in case you have a long wait
  • Your calendar – This is helpful for scheduling any future appointments.
  • A friend or family member – Having another person to listen or to take notes will help you when you are dealing with complex information.

 

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