Ectodermal Dysplasia Community

Learn how others live with Ectodermal Dysplasia and share your story

Rare Souls

Rare Souls

by yleniatondo published about 1 month ago

My name is Ylenia, I am a 22 year old girl, and have Ectodermal Dysplasia, the same as my two sisters who are 19 and 9 years old.
I read many of your testimonials, and noticed that barely any of you speak about Dysplasia, the sole focus is on hair. To my great sorrow, I know that I will never be a ‘normal’ child. I was born with a mass of black, curly hair, that unfortunately fell out at the a...

The story of William, a life with ectodermal dysplasia (written by his dad)

The story of William, a life with ectodermal dysplasia (written by his dad)

by Dadi published 3 months ago

Hello I am William born on 14.08.2014 in Italy. I came to the world in the 38th week. At birth a wound was formed on the back of my head. I don’t know if it impacted my health but until today, my hair doesn’t grow in that place. My disease was not noticed at first. I had only dermatitis. When I was two years old, my parents started concerning that my teeth did not come out. So with help of doc...

Jose´s Testimony in Brief. Enjoy it !

by jose1967 published 9 months ago

I guess it is difficult to summarize a whole life long testimony. But here you can find mine, from the point of view of a person living with ED.

The main difficulties are related to the summer season in Spain. It is the hot season where you can reach temperatures up to 40ºC in the day time.. I was born with ED in a hot summer day of August. It happened in Madrid (Spain) and I always wonder h...

My story

My story

by cristinap published 10 months ago

On August 11, my son David was born, I already had 2 other kids: Carlos and Sara. During the birth, something beautiful happened: when I had my kid the bag was intact. They had to break it when he was out of me. The midwife said that the kids born that way are born with luck. But when I had him in my arms I felt something different. I told them that something was not right but they ignored me. ...

Invitation to visit Australia

Invitation to visit Australia

by andrewwilliams published about 1 year ago

Australia is famous for our Sun, Sand, Surf (also sharks, spiders and crocodiles...). All of these can be problematic to HED children. This can make families take this beautiful part of the world off the families travel map. JOIN ozED - Australian Ectodermal Dysplasia Support Group CAMPHRENCE (Kids CAMP - Parents CONFERENCE).
2016 - Sydney - New South Wales
2017 - Brisbane - Queensland

An old child

An old child

by albertares published over 2 years ago

How do you grow up with ED (Ectodermal Dysplasia)? When I was a child, a school mate gave me a first hint of what was going to become a key to understanding what I was been born with and would accompany me through all my life. Hi all,

As I am writing this, I am 35 years old. When I was about nine, one of my school mates came to me in one of those “moments of lucidity” that you have when you ...

Help us improve the lives of people living with ED

by RareConnect Team published over 2 years ago

"I want to sweat, because my children can’t"

My name is Ignasi Serrahima, I am 45 and I have a pretty healthy life although I haven’t been doing any regular exercise for a few years now. This will be the first marathon I have run in my life.

Last October, while I listening to the radio program "The M...

Dear Superheroes,

by AnaCataluna published over 2 years ago

After 24 years of living with Ectodermal Dysplasia, I can no longer imagine living any other way... There have been difficult moments, accompanied by indiscreet glances, full of rejection or pity, cold surgeons and slow recoveries, incomprehension and a longing to give up, tears of rage and vacant smiles...
Years ago, I longed to be born again without this disease, but now I am sure that it h...