Rare Souls

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.

Written by yleniatondo, published about 1 month ago.

Rare Souls

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 age of 6 years old and didn’t regrow. In time it became blond, thin, short and as fragile as glass, almost transparent. I spent my childhood having to contend with looks of disgust, words which burnt like fire, swallowing rude questions and being derided by people, who I thought were ‘mature’ but that ultimately revealed themselves to be people without either tact or feelings. I had an even more traumatic adolescence, since all of my friends were beautiful, with long hair and a great desire to live their adolescence...well, I looked at them and felt invisible, always the odd one out and nobody paid any attention to me unless it was to make fun. All of this was made worse by the fact that I felt a bit more ‘fortunate’, as things were much much worse for my sister...this killed me, the fact of having to see her cry before going to school, and see her vomit each time someone stared at her too much, and it made me feel even worse seeing her shut in the house to avoid being made to feel bad or judged by anyone, her life slipping away aged 10, 13, 15 years old... I was lucky enough to meet people who wanted the best for me, who didn’t judge me and, on the contrary, had a great deal of respect for my family and I. I was lucky enough to see my sister fight back and break down the barrier that kept her away from her life, from everything that it was her right to expect, such as eating an icecream and not constantly looking round with fear and shame of constantly attracting attention. I was lucky enough to see another sister being born, who was unfortunately not an exception, but was our salvation, who arrived when we needed her the most, when we had lost our smiles and hope... We grew up with this strength of character that not everyone has, I feel different too because I take care not to hurt anyone else, not even by accident, not even with an overly ‘curious’ look. 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, and that often a smile and a hug are the best remedy in existence... 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, and I decided to live it fully and not miss out on anything in life just because sometimes we are afraid.
It’s true, I have many fears, the same as those of my sisters and parents that would give life to destroying this disease. 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 and we will pass it on, I don’t know what will happen and just hope that this won’t happen again.
Last year we discovered a small ‘solution’ that made us very happy, and that now makes us into ‘women’. It isn’t a cure, but just a prothesis that allows us to feel like women and secure in ourselves, because if we don’t feel well in ourselves then nobody else will. I had moments of confusion and discomfort at the start due to local gossip, but then after thinking about it I understood that my happiness comes first and now I don’t regret it. I’m happy because I have a superior understanding to those the same age as me, and we have values and love to sell thanks above all to our parents which I’m very proud of. I consider myself to be lucky because what we have is simply aesthetic and we are fortunate to be in excellent health. Don’t be held back by fear or shame, our souls are rare and we must take care of each other!

Written by yleniatondo, published about 1 month ago.

3 comments for «Rare Souls»

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  • Tihana | published 23 days ago | Originally written in Italian

    Cara Ylenia, benvenuta su RareConnect e grazie per aver condiviso la tua storia. Il mio nome e Tihana e lavoro come gestrice di comunità online qui. E un piacere leggere che sei positiva e felice nonostante tutti i problemi e le paure. Sei in contatto con l'associazione Italiana https://www.rareconnect.org/it/community/s...

    Cordiali saluti,
    Tihana

  • martacampabadal | published 23 days ago | Originally written in English

    Thanks for sharing your story! It's very touching and with a positive message.

    Because you mentioned having children in your story, I want to ask if you received genetic counseling?

  • jose1967 | published 22 days ago | Originally written in English

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