I've been seeing a great guy for a few weeks now. On our last date, he revealed to me that he has no hair or teeth (wears a wig and dentures) because of ectodermal dysplasia. We kissed for the first time that night, and I'm so smitten. I just wanted to come here to learn more about ED and to say to people who have it: It's not some awful deformity. It can be barely noticeable. Please don't feel any different because of it.
As an ED affected male, I was never interested in being in the groups. They made me feel like I had a problem, and here's all these other people with that problem. My coping mechanism was to convince myself I didn't have a problem and that I was as normal as the next person. Now that I'm older (29) and living a full, successful life I feel like I should probably get involved in sucha group.
What a wonderful video! Without the NFED, I don't know what we would do. Thank you for your tireless efforts to bring awarness of ED. Thank you, thank you, thank you!!!
Oh what a great video! I am so thankful for NFED!!!! It is amazing and helped me transition so wonderfully into my daughters and my diagnosis of XLHED! I felt so alone, and then We found you!
This is simply amazing! I am an artist that does donation drawings for different foundations, I am unable to donate money strait to due to our current state of economy here in America. I do donations to foundations that embrace difference and allows people to be their selves. I would love to help you out with this foundation. I am not the most experienced artist but I am willing to help however i can. I may only be 14, but i feel i can make a difference. Thank you, so much.
I'm a disabled granddad that has a three year old grandson that has ectodermal displaysa. I've been raising him by myself since his birth and have no help from anyone. No financial help from anyone. I'm very poor so it is extremely hard on us. I am happy there's a great group of people to at least tell their stories. It helps. We are homeless right now so if anyone don't mind praying for us to get a home would be greatly appreciated. God bless you all.
Hi, Ronald. We're glad that your grandson has you to care for him. If you complete this form at www.nfed.org/join-us/, we can provide you with information and support. Be sure and check out our website at NFED.org. It's filled with great information to help you know about your grandson's condition. Our staff would love to talk to you and help you. Give us a call at 618-566-2020. We are here to support you!
Thanks for the info. I heard about HED on Iowa Public radio today, they were chatting with Bonnie Rough, who has a new book out (maybe its not new??) Anyways, thanks for helping me to understand and accept people with these differences.
It seem to me, that lack of hair and teeth’s are a painful issue, but lack of body hair and even sweat glands is in my eyes a bigger issue. How do you get rid of that body heat? They are so amazing, and as a nurse and never been into anyone with this diagnosis, this is a very good information, and I I ever meet anyone, I’ll know what to do and say :) Because they look different, is not my issue, as long as I know what to take care of. I got a child (grown up now) with a rare disorder, but not visible on her. You in my ❤️
Hi, Jaylord! I'm not sure if we have any referrals for the Philippines, but I would recommend connecting with Kelley, our Director of Family and Community Programs, to see if we have any contacts there. You can email her at kelley@nfed.org
+nadine bee Hi, Nadine. Welcome to our NFED family! Have you been in touch with us? We have lots of support and resources to offer you. If you have not, call us at 618-566-2020 or email us at info@nfed.org. Supporting you. Supporting each other.
+Autumn Moon Hi, Autumn. We have lots of families in that area. If you contact our office at 618-566-2020 or info@nfed.org, we can connect you. Thanks for stopping by our page!
I've been seeing a great guy for a few weeks now. On our last date, he revealed to me that he has no hair or teeth (wears a wig and dentures) because of ectodermal dysplasia.
We kissed for the first time that night, and I'm so smitten. I just wanted to come here to learn more about ED and to say to people who have it: It's not some awful deformity. It can be barely noticeable. Please don't feel any different because of it.
As an ED affected male, I was never interested in being in the groups. They made me feel like I had a problem, and here's all these other people with that problem. My coping mechanism was to convince myself I didn't have a problem and that I was as normal as the next person. Now that I'm older (29) and living a full, successful life I feel like I should probably get involved in sucha group.
What an amazing group. Thanks so much for shedding light of this condition!
What a wonderful video! Without the NFED, I don't know what we would do. Thank you for your tireless efforts to bring awarness of ED. Thank you, thank you, thank you!!!
You guys are AWESOME!
The tooth part looks so cool! I know it is bad, but he looks so intimidating!
Oh what a great video! I am so thankful for NFED!!!! It is amazing and helped me transition so wonderfully into my daughters and my diagnosis of XLHED! I felt so alone, and then We found you!
I love this video and will be sharing it on my facebook account. Thanks NFED for everything you have done and continue to do!
Beautifully done!!!
Mary you are an inspiration to us all!!!
Great video. Very informative. Thank you.
This is simply amazing! I am an artist that does donation drawings for different foundations, I am unable to donate money strait to due to our current state of economy here in America. I do donations to foundations that embrace difference and allows people to be their selves. I would love to help you out with this foundation. I am not the most experienced artist but I am willing to help however i can. I may only be 14, but i feel i can make a difference. Thank you, so much.
I'm a disabled granddad that has a three year old grandson that has ectodermal displaysa.
I've been raising him by myself since his birth and have no help from anyone.
No financial help from anyone.
I'm very poor so it is extremely hard on us.
I am happy there's a great group of people to at least tell their stories.
It helps.
We are homeless right now so if anyone don't mind praying for us to get a home would be greatly appreciated.
God bless you all.
Hi, Ronald. We're glad that your grandson has you to care for him. If you complete this form at www.nfed.org/join-us/, we can provide you with information and support. Be sure and check out our website at NFED.org. It's filled with great information to help you know about your grandson's condition. Our staff would love to talk to you and help you. Give us a call at 618-566-2020. We are here to support you!
Thanks for the info.
I heard about HED on Iowa Public radio today, they were chatting with Bonnie Rough, who has a new book out (maybe its not new??)
Anyways, thanks for helping me to understand and accept people with these differences.
It seem to me, that lack of hair and teeth’s are a painful issue, but lack of body hair and even sweat glands is in my eyes a bigger issue. How do you get rid of that body heat?
They are so amazing, and as a nurse and never been into anyone with this diagnosis, this is a very good information, and I I ever meet anyone, I’ll know what to do and say :)
Because they look different, is not my issue, as long as I know what to take care of.
I got a child (grown up now) with a rare disorder, but not visible on her.
You in my ❤️
Most awesome person in the world with HED is Michael Berryman, he is absolutely awesome!!!!
We come in all shapes, sizes and colors :)
I have ed. greetings from Brazil
OMG, my friend has this and he never told us what is was now i know.
I'm also affected by this, I'm came here to find cure but unfortunately there is no cure. May God help us.☹
My son has this condition. We are from the Philippines and we dont know a center that can cater to our needs
Hi, Jaylord! I'm not sure if we have any referrals for the Philippines, but I would recommend connecting with Kelley, our Director of Family and Community Programs, to see if we have any contacts there. You can email her at kelley@nfed.org
I have ED.
By 27 I already looked like a skinny middled aged man.
Never had a girlfriend even until now where I am much older.
My family facing this disease
Thank you for commenting. Learn more about ectodermal dysplasia symptoms and treatments at nfed.org
Mary Kaye rocks....
koi urdu wala mely ga is topic per
I have this :(
My son has this...i wish u all d best in life dear....
thank you
+nadine bee Hi, Nadine. Welcome to our NFED family! Have you been in touch with us? We have lots of support and resources to offer you. If you have not, call us at 618-566-2020 or email us at info@nfed.org. Supporting you. Supporting each other.
I am a female with this. Anyone in Seattle?
+Autumn Moon Hi, Autumn. We have lots of families in that area. If you contact our office at 618-566-2020 or info@nfed.org, we can connect you. Thanks for stopping by our page!
My name is Stacey S. Way - born with EEC. I am an Advocate for differently abled people. You can find me on Facebook!!!!
im 14 im missing 14 adult teeth my parents insurance wont cover anything i hate them so much
I hope you are doing better now ❤❤❤