By Vinesh Parekh

Vinesh Pare111kh (2)Hello. My name is Vinesh. I am from India but currently live in Canada. I am 27 years old and have ectodermal dysplasia. I don’t have sweat glands. For me, having no sweat glands is a handicap. I moved to Canada two years ago because the temperature is cooler. In India, I felt as though I had no life because summer stays for most of the time.

I couldn’t play sports, go to school in summer time, enjoy picnics with friends, or have a girlfriend. The biggest problem with this disease is being unable to live a stress-free life. I always worry when I have to go somewhere or meet someone and the weather is not supportive. If I indulge in outdoor activities in the heat, or even indoor sports, I start feeling dizziness and weakness in no time. My face will turn red. I feel like a hot coal is burning around my face.

I crave for sweat so that the heat which is burning inside can be released, but I have never been able to sweat. The palms of my hands are always very hot and dry. My legs remain warm too. I feel embarrassed when I shake another person’s hand, as their palm is always cold. I’ve been in many bad positions where I could almost die from the heat, but somehow I survived. Since moving to Canada, I feel like others I’ve met enjoy summer but I can’t because ectodermal dysplasia doesn’t allow me to enjoy outdoor activities. I have made many friends but I keep losing them as I have to make excuses for not going out with them.

My eyes are dry and my hair is thin. Even though I live a normal life, I’m abnormal. All of my decisions – work, study, friends, vacations –  are based on how my physical condition will react. Once my body starts warming up, I don’t feel comfortable around people. I feel angry and want to be alone. It takes hours to get my body temperature back to normal. I generally spend my whole day inside an air conditioned room. I can’t even explain my illness to many people because it is invisible. Sometimes people hear my story but forget as they don’t see me as having a disease, but I’m burning from inside. I am always thinking “How will I survive?”  I feel as if one bad day will come and I could be stuck outside in the heat without help, then I will lose my life.

I have had this disease since birth. My mother has it and my maternal grandfather had it. I always see my mom crying from her regret of having a child who’s faced with the same disease. I’ve planned not to marry and not to have kids as this disease is life threatening. I’ve seen fruit sellers in India stand under the sun for hours and do business, but I couldn’t even stay five minutes to buy fruit from them. I have undergone many medical and natural treatments but nothing has worked. I am still a diseased person with a hope to survive this life. I hope others who are familiar with ectodermal dysplasia can give me advice on how I should live my life, and provide me with temporary solutions that will be helpful if I’m caught in a struggling position.

Thank you so much for reading my story and I wish to God that nobody would ever have this disease.

Editor’s Note: Vinesh Parekh recently connected with the NFED to share his story. Do you have any words of encouragement or advice you’d like to share with Vinesh? Please leave your comments below or on our Facebook Page.

If you’d like to share your story, contact Jodi Edgar Reinhardt at jodi@nfed.org or click here and complete the “Contact Us” form. 

You may also like:

I Want to Keep My HED

Be Happy That You Are You

Top 10 Most Common Ectodermal Dysplasias

14 Things You Didn’t Know About Ectodermal Dysplasias

 

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5 comments on “Struggling to survive with ectodermal dysplasia”

  1. 1
    Heather McKelvie on October 9, 2015

    Vinesh, it is very sad to read that you feel such despair over your condition. I hope that connecting with the NFED will help you to learn how to better deal with ectodermal dysplasias. There are many people out there with this condition (and more severe forms of it) who live full, happy lives. I hope you find peace and acceptance for yourself.

  2. 2
    The Moment My Son Taught Me About Strength | National Foundation for Ectodermal Dysplasias on November 3, 2015

    […] Struggling to survive with ectodermal dysplasia […]

  3. 3
    Konrad on July 19, 2019

    Hi my name is Konrad Verner 37 yo from Croatia, Europe, thank you for this story I have the same problem and you describe you life in the best way till now that I’ve heard, yes the worst thing is that the “normal” people can’t feel the (Hed) inside the body… like me also I think that I’ll never have children.

    1. 4
      Jodi Edgar Reinhardt on July 23, 2019

      Hi, Konrad. We are glad you enjoyed his story. You found the right website as our organization is in touch with thousands of families who can’t sweat and who do understand what that’s like. That can be reassuring, we hope. We encourage you to join our organization and connect with other like Vinesh who can relate. We’re here to support you and listen! ~ Jodi, NFED, Director, Marketing and Communications

  4. 5
    Helen on February 11, 2020

    Hey Vinesh, my son is growing up in Ireland with Ectodermal Dysplasia in Ireland. He is 14yrs old. His outlook isn’t one of despair…. I’m presuming he will marry and have children as he is very happy and very fulfilled as a teenager. He has great friends that accept his differences. He does badminton and boxing. Gaming and loves technical graphics and farming…He isn’t letting his condition define him but seeing that he was made with this condition for a purpose that will lead him to the relationships he has and the job he will take etc. There are lots of places that never get too warm. Ireland is certainly one of them. You have been made with much more than ED. There is nothing you cant so in the right environment. Learning to manage the ED and find tools to cool down. I hope and pray you get to love yourself for who you are and who you were purposefully and wonderfully made to be.

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