There was a time when ectodermal dysplasias were incorrectly thought to only affect males. For the last 15 years or so, we have made it a point to learn more about how the disorders specifically affect women. Teens and women affected by ectodermal dysplasias have taught us a lot about how the conditions affect their breast development. You have shared in a phone call with one of our staff, in a conversation at the women’s workshop at the Family Conference, answered questions for our landmark Women’s Survey or shared experiences in our private Facebook group for affected women.
Your input and information have been key to our deeper understanding. We are pleased to announce that we have a new library article titled Breast Issues in Ectodermal Dysplasias written by Dr. Jill K. Powell. Dr. Powell is an adult and pediatric gynecologist who has served on our Scientific Advisory Council since 2004. She shares in the article more extensive findings from our Women’s Survey.
Breast Development Issues
From the Women’s Survey, Dr. Powell reports that one in seven women reported asymmetric breast development with at least one cup size different between breasts. Learn more breast development facts and what types of issues both women AND men who are affected can have.
Have you ever wondered why breast development would be an issue if you have ectodermal dysplasia? Dr. Powell has the answer. And guess what? It’s related to your sweat glands. Find out how.
Treatment Options
There are several options for managing the cosmetic issue of underdeveloped or absent breasts, if desired. Some women have chosen breast augmentation. It’s a matter of personal choice and a private decision. Three women with absent or abnormal breast development shared their stories and whether or not breast implants was right for them. If you are considering augmentation, learn about the various treatment options in our new library article and how to get insurance coverage for them (if you are in the United States).
Talking to Your Child/Teen About Breast Development
Does your daughter have ectodermal dysplasia? This article will help you understand how and when to discuss breast development with her. You will also want to know what the best age is for having breast augmentation if that is the treatment option desired.
Next Up: Breastfeeding Complications
Next month, we will share more information about how ectodermal dysplasia can impact breastfeeding. If you are affected and wish to share your breastfeeding experience, contact us.
Download Breast Development Article
Is there any data on females with ectodermal dysplasia and pcos (polycystic ovarian syndrome)?
Hi, Diana. We do not think (at this point) that there is a relationship or correlation between ectodermal dysplasias and PCOS from what we learned with the Women’s Survey. ~ Jodi, Director, Marketing and Communications, NFED
I see there’s something about one breast being bigger than the other, but what about not developing much breast at all? All of the women in my family have had big breasts, including my mother who had to get a breast reduction because she was a triple G cup and was having back problems. But it’s been several years since I’ve hit puberty and I am still at an A cup. Does this also have to do with my ectodermal dysplasia?
Hi, Quinn. While we don’t know in your case specifically, we can share that yes, women affected by ectodermal dysplasia have not developed had any breasts. I encourage you to click through to library article which talks more about breast development. If you have any other questions, don’t hesitate to call our office at 618-566-2020. Thanks, Jodi
I have one nipple bigger than the other since i hit puberty and my lateral incisors are missing. Does this mean i have ectodermal dysplasia?
Hi, Adriel. We encourage you to consult with a geneticist or genetics counselor to determine if you are affected by an ectodermal dysplasia. Please contact Kelley at kelley@nfed.org with additional questions.