by Marcela Hernandez

Lack of confidence has daunted me all my life, from childhood and even into my adult life.foto NFED 1

I was born and raised in Uruguay, a small country in South America, the youngest child of a middle class family. They supported me and gave me everything within their possibilities, from material things such as good education and healthcare, to more important ones such as love and support.

But sometimes this is not enough, because it is your own personal journey, your own personal experience. You have to go through it with resilience and plucking up courage to fight all your demons.

foto NFED 3
With HED, my teeth, sweat glands and hair affected.

Even though my ectodermal dysplasia is mild, it has been strong enough to undermine
my confidence. I was born with no sweat glands, malformed teeth and sparse hair. It took a long time for my parents to have a diagnosis because I looked like a normal baby but cried like crazy and was always running a temperature.

One day, my mother saw me crawl towards the cold tiles of the bathroom and, to her surprise, I stopped crying as I laid on them. She then realized that my problem was heat. When I cut teeth, the pediatric dentist helped reach the diagnosis: I had hypohidrotic ectodermal dysplasia (HED).

My parents never made me feel I had some kind of disability. On the contrary, they encouraged me to do any kind of activity, just making sure I did not overheat. This helped me a lot.

At that time, in my country, not many places were air-conditioned. I remember that my mom used to rush to school to pick me up in the middle of the day because I started to feel the heat, and she would then give me a long and cool immersion bath. Then I learned to develop my own cooling techniques and you can’t imagine how creative I’ve become about it!

Foto NFED 2
My parents taught me that I can do anything.

During my teenage and younger years, dating was one of the most difficult aspects of my life. I was so introverted, fearful of smiling. In one word, I was blocked and did not let my emotions flow because of these physical flaws (apart from the fact that I always chose the wrong guys!).

But fortunately there is always some kind of solution for physical flaws, so with the help of my family and friends, plus some psychological therapy, I was able to overcome this. After falling down a thousand times, I raised up a thousand more until I found my place in this world, with the right person.

Foto NFED 6
Look at me now!

I am 46 years old now and believe it or not, I moved six years ago to Florida, one of the hottest places on earth. My late father used to say, “Couldn’t you find a cooler place to live?”  But challenge has been a constant in my life.

I am still very active and happily married. I have always loved sports and I still practice them despite the Caribbean heat. I do horseback riding, zumba, spinning, and all sorts of workout, indoors in summer and outdoors in winter. Of course, I am well equipped with all sorts of cooling devices.

But the message I would like to transmit to the younger generations suffering an ectodermal dysplasia is to…

  • never give up,
  • be resilient and fight as hard as you can to overcome lack of confidence,
  • love yourself as much as you can, and
  • live every single day of your life as if it was the last one.

This genetic disorder only makes us stronger. There is always someone, something that comes across your life unexpectedly that changes your life overnight. Don’t lose your hopes even though you might be going through dark times.

Remember that there is always sunshine after the rain, and you are never alone!

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7 comments on “My Story: Emotional Resilience and Hope”

  1. 1
    Mariana Lores on April 12, 2016

    Mi nombre es Mariana, tengo 46 años igual que vos y vivo en Neuquén, Argentina. Uno de los hijitos de mi hermana menor, Jerónimo, que además es mi ahijado, ha sido diagnosticado con displasia ectodérmica. Es un niño hermoso de 4 años que tiene un hermano mellizo y otro hermanito de un año en proceso de diagnóstico ya que posiblemente también tenga la enfermedad. Ellos viven en Mar del Plata.Ha sido muy gratificante para mí leer tu historia y verte tan bien en la fotografía actual. Muchas gracias por compartir tu testimonio, un abrazo.

  2. 2
    Jodi Edgar Reinhardt on April 13, 2016

    Thank you for your message, Mariana. Marcela and so many others are living proof that individuals with ectodermal dysplasias can and do live the lives they dreamed of. Your nephew is lucky to have a caring aunt in you.

  3. 3
    John Dickie IV on April 15, 2016

    Thanks for your powerful words of encouragement. My mother wonders why I moved to Florida too!

  4. 4
    Dear NFED volunteers, | National Foundation for Ectodermal Dysplasias on April 19, 2016

    […] My Story: Emotional Resilience and Hope […]

  5. 5
    Hayden on June 10, 2016

    Hi there,
    If you don’t mind me asking, what kinds of cooling devices do you have to keep you cool? I do have a cooling vest but always curious what else is out there besides ice packs, soapy bottles, and fans.
    Thanks!
    -Hayden

    1. 6
      Hayden on June 10, 2016

      That is spray bottles not soapy haha!

  6. 7
    Daria on June 18, 2018

    Thank you Marcela! I can totally relate to your story. But in my case I was never diagnosed with HED, I can sweat! But my my teeth and hair are affected. My son on the other hand had it all 🙁

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