Sixth Grader Talks about Life With Ectodermal Dysplasia
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- Опубліковано 16 вер 2024
- Josh Sandy spoke at the finale of the 2017 National Foundation for Ectodermal Dysplasias Family Conference about ectodermal dysplasia and how it has affected his life.
This wee dude is awesome, tears in my eyes, Josh did what I could not do, his bravery is inspiring. I have AED and it has affected every aspect of my life but this wee dude has inspired me. Thank you.
What a beautiful speech from a beautiful boy❤️
My son has the same, he has been the fastest running at two different primary schools.
I can feel you bro i have this diseases am 16 now i am trying to handle the situation
What happen in this disease?
So basically it’s called ecdermal dysplasia I have it and and it makes you have missing teeth and it also makes your teeth like pegs and you don’t sweat in certain places and also it deeply affects your speech and your pronunciation it affects your skin and hair it gives you like less hair than everyone else it’s very life changing but don’t worry you can only get it from genetics and having less sweat glands you overheat really badly and the risk of having a stroke is higher
One of the characters in my Turning Pages series of family-friendly novels has ectodermal dysplasia. I'm hoping to spread awareness of the condition.
Good bless him✨🥺
Damn I feel you buddy! I’m happy your family and friends are taking care of you , mine are awesome ! Keep safe!
A male with HED syndrome can make babies ?
@@samirakhan9333 Yes, but the babies will also have the disease.
I too have HED and I'm not sad about it. It had affected me a lot when I was a kid, but now, I realize that we should live with it.
Bro do you got your teath and hair implants transplants
@@carryminatifanclub5363 Got tooth implants, didn't get hair implants as my hair isn't that sparse.
I have it as well, it still bothers me a lot at the age of 16, since I‘m not able to do the activities that I want to, such as boxing etc because of not being able to sweat. I‘d say I feel better about it than I used to when I was little, but obviously it leaves you with a sort of negative view towards the world and how unlucky you must be to be one out of 100k people that have it, and not being able to do shit about it. Hope you‘re doing well with it. Any tips you can share that you‘ve learned over the years? Would be highly appreciated.
People that have ecdermal dysplasia but are proud of it
👇
I have the same thing as him
God bless
God bless you ❤️❤️❤️❤️
My son is being tested for this as he has all the symptoms
Hi, Cordie. Please contact me at kelley@nfed.org with any questions. We're here for you. ~Kelley
Menu ham oglim huddi shunday hozir 5yosh biz uzbekistonlikmiz tishlari yoqligidan terlamasligidan juda qiynaladi
learn more at nfed.org
I'm the same as him, and it fascinates me, he just looks just like me before. I'm lucky because it's not that bad for me. At times I can't sweat and have very thin hair. Btw very kind of him.
Hi, Noah. We would love to be in touch with you. You can register at www.nfed.org/join-us/ to receive more information.
I am also anhydrotic ectodermal dysplasia and I am living in a small village in India i have sharp and less teeth
Hi iam from lndia maharashtra .my 24 years old daughter and 18 years old son also face hair loss from by birth and poor nail growth. Where we go for treatment in india.
Please contact our office at info@nfed.org and we can assist you.
I know what it's like to