"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.
We grew up with this strength of character that not everyone has. Nothing hurts me now like then, I don’t feel bad because I discovered that there is no need to prove anything unless you truly believe in it. I’m happy because I’m close to people who love me for what I am not what they want me to be, I learnt to love myself because despite everything there is nothing more important in my life. It’s true, I have many fears. I’m afraid thinking about my future, I’m afraid thinking about giving life to a child, because I don’t ever want to pass on what has been passed on to all of us. I don’t know what will happen and just hope that this won’t happen again." 🌐Read Ylenia's full story on RareConnect.org. Search for the "Ectodermal Dysplasia" community