1. The first descriptions of clinical cases that might correspond to what we would now classify as ectodermal dysplasias date from 1792.
  2. Charles Darwin also cited cases of ectodermal dysplasia in a book he published in 1875.

    charles darwin
    Charles Darwin
  3. In 1929, Dr. A. A. Weech was the first to coin the term “ectodermal dysplasia” in the medical literature.
  4. The condition is defined by abnormalities in two or more of the following: hair, teeth, nails, skin and sweat glands.
  5. Ectodermal dysplasias can also affect parts of the eye, ear or other organs and body features which develop from the ectoderm.
  6. There are more than 100 different types of ectodermal dysplasias cited in the medical literature.
  7. Only 49 of the 100+ syndromes are represented by families who are on the NFED’s database.
  8. 44% of the people the NFED is in touch with have only been diagnosed as having “ectodermal dysplasia” and do not know which specific syndrome affects them.
  9. The conditions affect both men and women and all races.
  10. An estimated 1 in 10,000 births results in an ectodermal dysplasia.
  11. Symptoms can range from mild to severe.
  12. The ectodermal dysplasias can be passed from mom to son, mom to daughter, dad to son, dad to daughter. How it is inherited depends on what ectodermal dysplasia syndrome the family has.

    The ectodermal dysplasias can be passed down from generation to generation.
    The ectodermal dysplasias can be passed down from generation to generation.
  13. The ectodermal dysplasia might be new in a child and neither parent has the gene for it.
  14. Scientists are testing a potential treatment for the most common type, XLHED, in babies right now in a clinical trial.

February is Ectodermal Dysplasias Awareness Month. Help us spread the word by clicking on the icons below to share this post! 

17 comments on “14 Things You Didn’t Know About Ectodermal Dysplasias”

  1. 1
    Heather McKelvie on February 6, 2015

    Reblogged this on EEC Chick and commented:

    February is Ectodermal Dysplasias Awareness month. Here’s an interesting post from the NFED blog. #7 is interesting… where’s everyone else hiding? 🙂

    1. 2
      hunter girdler on September 10, 2019

      thank you I didn’t know that and what color is the ectoderma dysphasia like pink is breast cancer.

    2. 3
      Jodi Edgar Reinhardt on September 11, 2019

      Hi, Hunter. We don’t have a specific color for ectodermal dysplasia. The colors for the NFED are teal and blue.

  2. 4
    Struggling to survive with ectodermal dysplasia | National Foundation for Ectodermal Dysplasias on October 9, 2015

    […] 14 Things You Didn’t Know About Ectodermal Dysplasias […]

    1. 5
      Anitha Gangavatiker on April 13, 2017

      Hi Vinesh, I am also one of them suffering from this syndrome. God has created us like this only to bring out our potential. Give your best to the society in whatever way you can and lead a happy and satisfied life as we are far better than people suffering from cancer and other deadly disease.

  3. 6
    What Does HED Look Like? | National Foundation for Ectodermal Dysplasias on February 23, 2016

    […] 14 Things You Didn’t Know About Ectodermal Dysplasias […]

    1. 7
      mia ball on March 20, 2020

      who does ectodermal dysplasia affect more, boys or girls?


    2. 8
      Jodi Edgar Reinhardt on March 23, 2020

      Hi, Mia. The ectodermal dysplasias affect both boys and girls. It used to be thought that it only affected boys, but that is not true. ~ Jodi, NFED, Director, Marketing and Communications

  4. 9
    Annemarie lyons on August 4, 2016

    I www looking for a nice guy looking for love and it has to be Ectodermal dysplasia my age 46,and up I am a girl

  5. 10
    mark kuhn on January 31, 2019

    Thanks for posting! I have ectodermal dysplasia and at 60 found out I’m going to be a grandfather. Really helpful information. Thank you!

    1. 11
      Jodi Edgar Reinhardt on February 1, 2019

      Hi, Mark. We’re glad you liked the article. Congrats on being a grandpa! That’s awesome. I hope you get a chance to explore the rest of our website at http://www.nfed.org. We have lots of great information on the site and a library full of articles. Also, if you have not yet done so…if you fill out this form at https://nfed.org/join-us/, we can share with you lots of information that we have. We are here to help! Enjoy that future grandchild! ~ Jodi, NFED, Director, Marketing and Communications

  6. 12
    Judy on February 6, 2019

    Is Hidradenitis suppurativa a form of ectodermal dysplasia?

    1. 13
      Jodi Edgar Reinhardt on February 7, 2019

      Hi, Judy. No, that is not one of the types of ectodermal dysplasia.

  7. 14
    Monique on February 28, 2019

    Is there a support group in New York City for people born with ectodermal dysplasias?

    1. 15
      Jodi Edgar Reinhardt on March 4, 2019

      Hi, Monique. The National Foundation for Ectodermal Dysplasia is the only organization in the U.S. providing support for the ectodermal dysplasias community. We do not have any offices other than our main office. However, we can connect you with people in your state if you fill out this form at https://nfed.org/about-us/contact-us/. Also, we have a Family Liaison Program. Liaisons are people who are either affected by the condition or have a loved one affected. You can contact your New York Liaison by finding their contact info here: https://nfed.org/about-us/contact-us/. We also offer numerous private groups on Facebook. You can find these here: https://www.facebook.com/pg/NationalFoundationforEctodermalDysplasias/groups/?ref=page_internal. We are here to provide you with support. Feel free to call our office any time at 618-566-2020 or email us at info@nfed.org. ~ Jodi, Director, Marketing and Communications, NFED

  8. 16
    Ginger on August 15, 2019

    My child has mild ectodermal dysplasia and mild ectrodactyly and now having issues diagnosed with crohns, as i think its linked, is it? He is allergic to meds for crohns.. suggestions?

    1. 17
      Jodi Edgar Reinhardt on August 19, 2019

      Hi, Ginger. Thanks for reaching out with your questions. Could you please send this question to info@nfed.org? Kelley on the NFED staff will be able to talk with you and answer your questions. Thanks! ~ Jodi, NFED, Director, Marketing and Communications

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