By Vinesh Parekh
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.
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