The ectodermal dysplasias are rare conditions, some more than others. In fact, there are 180+ types. Families often wonder how many others share the type they have.
The following information is taken from our database. As you will see, the largest group is made up of individuals who have just told us that they have an ectodermal dysplasia but didn’t tell us which type.
Are you in this group? Perhaps, you didn’t know what type when you first contacted us but now you do have a specific diagnosis. You can help us by updating your profile. Just fill out the short form and tell us which syndrome affects you or your love done.
We know that there are many more individuals out there with these syndromes. They simply have not contacted us…yet!
Have you registered every person in your family who has ectodermal dysplasia with us? Do you have extended family members who are also affected but have not joined the NFED? Share this blog with them and invite them to join us.
You count. Each of your loved ones count. Please let us know about every person in your household who is affected.
Together, we are stronger. We are here…supporting you, supporting each other.
Hypo hidrotic ectodermal displasyia
My late husband and our 4 daughters.
X-linked hypo hidrotic ectoderm always dysplasia
My sin has KID syndrome. We are from Argentina.
*son
X Linked HED
Two of my children have WNT10A gene mutation. I have 3 children that our carriers and 2 that aren’t affected.
Are*
How do I find out for sure what kind I have? I just know the types of things I have had to deal with. Sparse hair,small mouth not enough room for my teeth so I had a lot pulled to make room for growing teeth, small statue, bones stopped growing when I was eight years old. I am now 59 years old. Mine does not appear to be genetically passed. We have researched that. We have been going to doctors since I was around 6- 8 years old and I still do not know what kind I have and would like to know for sure. We have been told so much I am not sure that the doctors have pinned it down yet. My parents have been told something but not me and I would like to know. (just me)
Thank you,
Catherine Bigham
Hi, Catherine. Have you had a chance to check out our information on how to get a diagnosis? You can learn more here: https://nfed.org/learn/diagnosis/. It can walk you through the process. If you still have questions, please don’t hesitate to call us at 618-566-2020. Our staff would love to talk to you.
Hello Catherine my son Jamie has x linked HED and is 13 years old apart from the normal hair , teeth and sweat gland issues he has very low bone density which so far the doctors have not linked or found a reason for . I was interested in what you said about your bones was you ever given a reason for the problem with your bones . Karen x
Bone density question
Currently, there are 5 members in my family undergoing treatment – both immediate and extended family members. I come from a large family with multiple family members affected. My son and I have been diagnosed as Autosomal Dominant Hypohydrotic Ectodermal Dysplasia since it was passed from a father to son and from father to daughter.