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Ever heard ofEctodermal Dysplasia

It is genetic, I think anyone like myself, My Mom does not sweat, I do not sweat, and...

Posted by justmekeh

It is genetic, I think anyone like myself, My Mom does not sweat, I do not sweat, and neither does my 50 year old daughter.

As a youth it was not so bad, but as I have gotten older heat is a major issue. I live in a cooler area near the beach, and even with that I try to stay out of the sun.

I can get sick from heat even in the shade. When I would go to a concerts in September for the day with an outside, temp about 80 degrees, with a breeze. The heat would just stay in my body. then headache, nausea, not usually vomiting.

Lately if to much heat it causes Hot Red Face, hot all over and sometimes increased heart rate, then I come inside, I put a medical type gel ice pack on my Upper chest, under the bustline, to cool my core, and organs and on the back of my neck. This helps a lot and I return to normal. The issue is this can happen in less than 15 to 20 minutes in direct sun, or a little longer in the Shade if hot outside.

Sometimes if I get to hot at night and my stomach starts to churn, I even lay an additional pack on my stomach. then I can go back to sleep.

The overheating also cause me to feel inflamed and my joints hurt, then I take Advil. So I have many symptoms like you others describe, but none come FROM being dehydrated.

Most of my life since high school has been exercise in the POOL outdoors, or walking jogging VERY early in the AM, and the rest in an air conditioned gym.

I used to be able to sit in a sauna for about 10 minutes or so and never did sweat, now I just do not go into a sauna, to many issues. Also I NEVER Travel in the Summer, TOO TOO hot, for years I would not visit the desert from May to October, even though I have a son and his family in AZ. I also Travel with a White Gauze cover-up even in the spring fall weather as the sun shining on me heats me up excessivly and then i am uncomfortable and don't get out to enjoy my trip, like to AZ or to Las Vegas. Who wants to have decline invitations all the time??? Like picnics and the like. I went to the High School Reunion, and then Picnic on Sunday this last September 2012, and had to leave by 1pm as It was getting to hot, even in the shade.....

Apparently there is no CURE! I have researched Cooling Vests and plan to wear one so I can enjoy more life. I am planning on using the Stacool Vest as they even sell it to the Navy. I know it is expensive, but If I can go out and travel or walk at the beach etc and do other outdoor activities, other than between 7am and 9am and after 6pm, I think the quality of life is worth the cost.

There are some that work on evaporation Use by soaking them in water and they work for quite a few hours. Since I have had success with ice packs I am choosing that style.

Doctors have not given me much help over the last 10 years, I found out about the Medical condition on my own by researching on the internet. There is a National Foundation in IN, nfed.org, is the link.
they are doing research to help someone if they are diagnosed in infancy, sorry to late for us, but If you have children they may not have to suffer their whole life.

hypohidrotic ectodermal dysplasia (HED) is the medical term for ones who do not sweat.

Good luck to all and post again if you have had a chance to try any other methods for staying Cool.View Thread

Posted byjustmekeh

1 Reply | Reply | Watch This DiscussionReport This| Share this:Ever heard ofEctodermal Dysplasia It is genetic, I think anyone like myself, My Mom does not sweat, I do not sweat, and...

Ever heard ofEctodermal Dysplasia

It is genetic, I think anyone like myself, My Mom does not sweat, I do not sweat, and...

Posted by justmekeh

Posted byjustmekeh

0 Replies | Reply | Watch This DiscussionReport This| Share this:Ever heard ofEctodermal Dysplasia It is genetic, I think anyone like myself, My Mom does not sweat, I do not sweat, and...

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