Anhidrosis Ectodermale dysplasie / inability to sweat. How I live

[@farhanalizai5286]

Hey, I have the same problem, I was fine before, two years back I had heat stroke luckily I survived but I developed this condition, and I know it's not easy brother. It's really hard. You really inspired me. Thankyou, I wish you all the good fortune, stay strong brother.

[@Belgianchefwithfrenchaccent]

😢 it’s a pain in the ** but thx, i send you positive vibes! 😊

[@Steven.Sinatra]

Hi! I am using my husband’s account to make this comment. I am in my mid-twenties and have had this condition my whole life. My mother also had it. I have learned to avoid heat at all costs. I feel so blessed to live on the northern, pacific coast of the US because it is almost always cool weather. The winter days are in the 40/50°F and the summers are 60/70°F. Whenever I travel to somewhere hot, it quickly becomes life threatening if I venture out of the air conditioning. I pass out quickly in the heat and feel weak, nauseous and have a head ache for some time after.I highly recommend moving somewhere that stays cool year round, either on a coast or high elevation. It is so liberating and life can feel normal! I wish you all the best in learning to live a full life with this condition. -Amy

[@Belgianchefwithfrenchaccent]

amy, take care!! it is not easy living with this condition! but you're not alone! i wish you all the best! keep your head high

[@misstaylor4032]

Thank you for your courage and for sharing your story. You have given the world a face, a voice to this silent and at times debilatating condition.

[@missprettyonabudget]

I truly hope there is a cure one day. I don't know what is wrong with me but last month it was very hot in here 42 C and very humid. I started getting very dizzy and getting hot flashes and my face was red, but for first time I notice I don't sweat. I normally do sweat not a lot but I do, but this was not pleasant, so I went home and I though I am suffocating, my husband got me oxygen bottle in case, I cooled down with some water towels on my skin, but the evening this kept going. I had vary bad heart palpitation last month for a while with it too, and anxiety came up mind it I never had those before. I took a Vitamin k2 supplement that night and that triggered something 1/2 my face, arm and leg started feeling numb and tingling. I went to a physician 4 days later why told me I am probably having just an anxiety... but it has been a month now and it is still 35-36 and I want to go out and stay but then I feel dizzy and fainting and what is funny I hardly sweat. With you you have this all your life bless your soul, am I experiencing anxidrosis too? I am very worried how will I live with this condition in the future. I pray that you are well. Does vitamin B12 help you? By the way? Sending a hug, Nat

[@elsagrace3893]

I u derstand that doctors are almost impossible to talk to and not very helpful at all but supplements do not work as a medical treatment.

[@andrewwilmoth6500]

Merci beaucoup! This is a very good explanation of what it is like to live with anhidrosis. I do have anhidrosis only affecting me from my waist to my feet, but it is progressively affecting more of my body. Mine is an acquired condition as I was totally normal in childhood. People have difficulty understanding how even a small amount of outdoor activity in the sun can make me so sick. It has become so bad that I work at night and stay indoors during the heat of the day, most of the time sleeping in an air conditioned bedroom.

[@Belgianchefwithfrenchaccent]

Damn buddy ! Take care! You’re not alone! It’s hard for people to understand what we feel, and they think you’re exaggerating! But hey you will have great friends defending you and take care of you!

[@dentalroots2070]

Dont give up.we r special children of almighty.i just use wet towel with myself. Sometimes I wear wet clothes. Dont think of what ppl think just live ur life the way u want

[@Belgianchefwithfrenchaccent]

Haha yes indeed, i don’t care what people think, as long we feel good, everything is fine! Take care !

[@LifeBeyondTheOrdinary123]

My daughter is 5 and has anhidrosis since birth. They don't know what is causing hers. She's been diagnosed with dysautonomia with harlequin syndrome but has harlequin syndrome on both sides of her body. She overheats fast. She also has sensitivity to sunlight

[@Belgianchefwithfrenchaccent]

Thx for the info, i will look it up, and i’m sending positive vibes to your daughter. ❤

[@sandiemom8888]

A year ago this month I was cleaning my house as always. It was hot as always. I got real hot as always but I always got a red face a was sweating. I would sit in front of a fan or take a cold shower drink cold water or gatorade and be fine. This one day when I got overheated as always. I got real red, sweaty but not as sweaty. O couldn't cool down I felt dizzy, a bad headache, nauseated, my heart was racing. I got the chills too. I went in my room as it has an air conditioner. But it took me 12-14 hours to cool down. But my body was still burning. I took my temperature and it was only 95.5. Which made no sense. I wasn't sweating at all. Since that day a year ago I am hot 24/7 I don't sweat at all. And a few months ago I started getting the chills on and off everyday while still having a hot body plus no sweating. Doctors don't care. I've mentioned they took an oath yet they don't care to run more tests. I have a disabled son who 7 months ago was diagnosed with a dangerous heart condition. I'm all he has so I worry awfully everyday. His father was financially supporting us as I can't work and my son needs me. Two weeks ago hos father attacked me. Itsa long story but the ending is ge took off n will not support us. Like others my son and I cant live on my car as it is very hot, winters are very cold and my car is old and unreliable. So if I haven't had enough now I have this worry. I started a go fund me on my youtube channel which was hard to swallow my pride but I have to keep my son and I alive. Hugs to all who suffer.

[@barbarab2536]

Ive never been to hospital for it but I do no sweat and have to be careful in a lot of situations, As well as I am always colder then anyone else as well like my body reverses actions to make me cold when i should be hot, everyone will be sweating and I am looking for a jacket.

[@TheArtfulOdds]

I have this. I just found out there was a word for it today. I’m 45 years old. I’m pretty sure it’s because I’ve had eczema my whole life and will be most likely impossible to treat but I hope I’m wrong. I hope you’re doing better.

[@Belgianchefwithfrenchaccent]

It took me also some time finding the right word of this illness. But now i’m sure it’s Anhidrosis. Extodermale dysplasia is another thing.

[@uglysonic8777]

I have the same issue. I see a dermatologist today about it. ❤️😞

[@Belgianchefwithfrenchaccent]

How is everything going so far?

[@pamelagreenfield1899]

Hi I’m trying to get a diagnosis I kept thinking maybe lupus but I always feel like how and cold like I’m sick but it’s every single day of my life ❤😢 I pray you find some relief

[@Belgianchefwithfrenchaccent]

😢😢 try first a dermatologist, if it’s not skin, try a cardiologist or neurologist. Take care!!! 🫶

[@EnglishLearners]

I know what u feel when it's over heated but everybody doesn't take it seriously 😭😭😢

[@Lovebombjoe]

I understand this situation 😢😢.... I am suffering from the past 16 years

[@hannahcurry9426]

I would love to speak with u more about this. I would love to know more symptoms you have. My grandparents always said i don’t sweat like normal. I do sweat but it’s just alittle. I over heat anytime I get in the heat and when I exercise or do physical activity in the heat. As a kid it was always so embarrassing because it would always end up with me almost passing out, vomiting, headache, cramps when I got over heated. I don’t know anyone who has this problem and I have never been diagnosed with anything.

[@Belgianchefwithfrenchaccent]

Hi hannah! I will be pleased to talk about it! You can look me up on Facebook on the Belgian chef with a French accent.

[@elsagrace3893]

You have to tell your doctor that you have this. Doctors are not very helpful unless you demand them to pay attention.

[@jackneals5585]

Wow I thought I was the only one!!!

[@Belgianchefwithfrenchaccent]

Same here 😅

[@BulgarianBicep]

do you get itchy when you get too hot? id really appriciate an answer watched whole vid 2x

[@Belgianchefwithfrenchaccent]

No I don’t get itchy. :-/ apparently I haven’t seen your first comment. I’m sorry about that. My skin can be itchy when it’s too dry.

[@alexisteenkamp4561]

I do and i have anhidrosis but I also have PLME which means I'm allergic to uva/uvb sensitive/allergy thing 😭

[@typsysmiley6897]

I get itchy and dizzy when I go out side when it’s like say 70. It’s so scary that I don’t go outside much and it’s keeping me from working

[@rosemariafuentes8977]

It gets worst over the years, I need to be inside my centrol air or an air conditioning otherwise I can suffer a heat stroke or possibly die. Whereas, water alone or a wet rag isn't enough for me because I don't sweat at all in my whole body and face, nor in my forehead. I've first started it like you and was able to cool off under the shades or water but that won't work for me anymore.

[@Belgianchefwithfrenchaccent]

😢😢😢

[@tabishhaider2445]

I also have this problem since childhood brother my hands, legs don’t sweat only some parts of my back sweat also I am from a country (India) were summers are hot 🥵

[@md.nazmussakib297]

I have the same condition. When i get exposed to heat or humid temp my muscle gets weaks, my back pains, my hand and finger and sometimes leg gets swelled, hard. Body is like oven, with little temp it gets hot. Do anyone has swelling problem in hand or fingers?? I am really afraid. It has not been diagonosed yet. 😢

[@Belgianchefwithfrenchaccent]

Its normal your feet and hands will swell. They try to cool down, but it can’t. So its stays around. It’s not a nice, and i send you positive vibes!

[@AnnelleSantos]

I know how you feel I too don't sweat at all and my whole body heats up

[@Huzaimie_99]

I got anhidrosis early this year and it really effect my emotion since Im a footballer, I have athletic type body but have really poor stamina and endurance since having anhidrosis, before this I have no problem play full 90 minutes on pitch but right now even after just 15 minutes my heart rate just jump to 176-190++ and never goes below that unless Im sitting and pour cold water on my body. Recently, I met a Doctor and suggest me two possible treatment to this problem either by skin treatment if the anhidrosis is cause by your sweat glands been blocked by your dead skin, this treatment usually have more chance to cure your problem than the second treatment which is to inject vitamin D to your nerves system behind your neck but in order for this treatment to work is totally depends on how your body accept the vitamin D to repair your nerves systems.

[@rishabhshrivastav5168]

If you're not born with it, it will cure at some point, try applying thick vaseline and running in heat, it will open your pores, and also eat healthy and natural diet with b12 and b6 vitamins, it will heal for sure.

[@EnglishLearners]

We got the same illness. I've been feeling this for 6 years more, and i dunno what to do coz everytime i got over heated so i just shower my body with water 😭😭

[@tabishhaider2445]

Where r u from

[@koowonjosiah9262]

Hello Sir, my name is Josiah Koowon, I am from West Africa Liberia, for the past three months been experiencing hypohidrosis, is there any home remedies to treat this condition?

[@Belgianchefwithfrenchaccent]

hi Josiah, I don't have any remedies... drink and cool a lot !

[@koowonjosiah9262]

Thanks

[@nightmare3564]

If you run 1 hour do you sweat

[@domingobright9471]

I have this too , was born with it, I don't have teeth too had to fix a denture , mine is so bad , I don't sweat at all, I always suck my singlets before going outside, I live in Africa too so hot😭

[@quennashaad9747]

I feel same as you and i live in africa too Have you got any solution??

[@english3816]

Do you exercise regularly? Will exercise or physical activities harm body

[@Belgianchefwithfrenchaccent]

I do not exercise a lot, I go for walks, I want to sport again but in small amounts. if it´s to warm I have to watch out or if I sport a lot ...

[@english3816]

@@Belgianchefwithfrenchaccent thank you

[@dentalroots2070]

I have same problem n I m a dentist

[@BulgarianBicep]

lately i get itchy when working out, and its severe so i have to stop, both my hands and feet sweat like crazy tho and my armpits do a bit

[@Belgianchefwithfrenchaccent]

Martin N but do you overheat?

[@Moving_Thoughts-Reimagined]

Hello there - I wanted to know if you were ever tested for Type 2 Diabetes? Do you know if you have anyone in your family who has this illness? Do you have troubles with your thyroid? Do you have trouble holding a healthy body weight? Are you allergic to cow's milk? This can be a suitable alternative to sports drinks or sodas (might be part of the problem). We have a product here in the States called Pedialyte. You might invest in a similar/this product, keeping it on hand. Do you care for raw vegetables and fruits? These might be very helpful when trying to stay hydrated, cool and full. Have you had any hormonal testing or have seen an endocrinologist? Those who need to sweat but itch instead might be nearing or are in a Type 2 Diabetes condition. I know that you said that you don't itch, but maybe consider my questions. I think it's great that you have a great support system of friends and family; they are your blessing! Not too many people have time to care nowadays - it's sad. If you have time, please answer my questions. I would love to know your answers. Take care and God bless you and yours. :)

[@elsagrace3893]

OMG! I understand you intend to be helpful but do you not hear the man? He has had a diagnosis and medical supervision his entire life. Your all natural BS is irritating when you try to apply it to serious medical conditions.

[@Belgianchefwithfrenchaccent]

No I am not . There’s a lot of different types

[@Vdanman]

I got this condition how do u fix it

[@Belgianchefwithfrenchaccent]

I really don’t know buddy, I’m not a doctor and unfortunately for my case there’s no cure 😔

[@Vdanman]

@@Belgianchefwithfrenchaccent I got it recently maybe 2 years ago is there hope for me

[@elsagrace3893]

@@Vdanman you need to ask a doctor. Why do you not understand this?

[@Vdanman]

@@elsagrace3893 are you a doctor

[@Belgianchefwithfrenchaccent]

@@Vdanmansorry for reaching out very late. But did you had any luck finding the right treatment?