:D SWEDISH woo. you have a cute accent :3 I had that surgery when I was 5... annnddddd you speak really well for having the syndrome. YES I have the syndrome. and yesh it is soo annoying. but whatever. soo...yeah.
@laurendd1123 Haha, do you like Sweden? :P Haha, thank you ^^ But I spoke very weird on this vid. because I was sooo nervous :P I think (and hope :P) I sound a bit better now :P Oh, you do? When you were five? Wow, do you remember anything from it? Haha ^^
Hello - thanks so much for this. My darling 5 year old daughter has moebius syndrome, so as soon as she is old enough, we will get you two in contact so you can talk about your experiences. We live in Australia and are lucky to live in the city that is home to the Caniofacial Unit - we are also looking at what surgeries are available, so I'm keen to know how effective your surgery has been (if you've had the smile surgery yet). Thanks again for this. Also, how did you cope socially at school?
@LizDMurf Hi :) This monday coming up, will be one year since my surgery and I've had a lot of changes. I can smile but I am still working on learning it. Allthough my life has improved sooo much since the surgery, just being able to move my cheeks makes it all so much worth it. Just one thing though, let your daughter be old enough to make any dessisions about surgerys herself. Because my parents let me decide it all by myself and I think that is for the best. I coped very well at school :)
Hey, My name is Kelly, I also have Mobius..I am 37 yr old female in Mich. I have lived my life and currently still do(haha..obviously)..this doesnt stop me. Hope you all can do what you want to also.. I am here for help and support. Text me 586-698-8250. Always here to make friends..
@TwiggyletteRamirez Hi :) No, I don't let it stop me either :) I am a really happy person and won't let such a small thing as mobius stop me ^^ Oh, We don't live in the same country so texting would be very expensive, sorry :P
I think you are wonderful. Hi, I'm James, I was born with Mobius, yes it's annoying, but it doesn't stop us being ourselves. Live your life! Can I have your number?
Thank you for sharing your experience of Mobius syndrome. I hope you get to meet genuine people with Mobius. I had just been reading a report by Paul Ekman (for university purposes)who mentioned Mobius. I had not heard of it before. Paul Ekman stated in his report (Ekman, Chapter 3 Emotions, 1999) that people with Mobius report great difficulty in developing and maintaining even causal relationships. Is this true I wonder as it was Paul Ekman's experience?
Thank you for sharing your experience of Mobius syndrome. I hope you get to meet genuine people with Mobius. I had just been reading a report by Paul Ekman (for university purposes)who mentioned Mobius. I had not heard of it before. Paul Ekman stated in his report (Ekman, Chapter 3 Emotions, 1999) that people with Mobius report great difficulty in developing and maintaining even causal relationships. Is this true I wonder as it was Paul Ekman's experience?
Great to hear this is not your experience regarding friendships. I think Paul Ekman's report is available on google if you or others were interested. I'd be interested in other people's comments regarding Paul Ekman's statement that "people with Mobius report great difficulty in developing and maintaining even casual relationships". It is important to question even peer reviewed articles and noted psychologists/people.
@nosrednayrrek Yes, I'm interested as well. I've been looking at some of his facial feedback work which suggests that the muscles on the face fire emotions, rather than the other way around. Would be an interesting research project to amass data on this and test that idea empirically.
Hi I have a one month and was diagnosed with the syndrome also like to know I can do to help care or therapies that can be as I'm going to be much need agradesere feed but I have to be holding their cheeks to make good suction to say something
Hi - I didn't know anything about Mobius syndrome before. Thank you for explaining it so well - especially in your (presumably) 2nd language. I wish you well and hope you have recovered from your operation.
My three year daughter has moebius syndrome, it has been a long road so far with many visits to childrens hostpital. she sees four dif therapyst a week and has had one surgery so far on her eyes. I love my daughter very much, and her big sister is very patient with her. We are part of the moebius syndrome foundation here in the states. I hope as my daughter gets older yours and everyone else who has posted their lives with moebius syndrome are here will be inpiring to her, God bless
I wanted to share that I also have Moebius Syndrome, and I feel better knowing that I am not the only one going through this, and there are people who can understand me from experience. I would enjoy getting to know you guys. The e-mail that I check most often is lagrima_227@hotmail.com. I would like to hear from you guys. TALK TO YA'LL SOON!
I wanted to share that I also have Moebius Syndrome, and I feel better knowing that I am not the only one going through this, and there are people who can understand me from experience. I would enjoy getting to know you guys. The e-mail that I check most often is lagrima_227@hotmail.com. I would like to hear from you guys. TALK TO YA'LL SOON!
its ok i dont have mobius syndrome and dont know much about it and i hope that i would later on . when i read all of your comments and watch your videos ,and by the way i really think your pretty. just so you know i am 10 years old and i wish that when grow up i would have a cure to mobius syndrome. Bye!
hi im 17 and i have moebius too i cant move my eyes side to side only up and down
anyway can i ask how rare is moebius? because i think im the only one in my family who has it i go to a nomal high school so somthimes i feel like im the only one who has moebius and i dont talk about my moebius almost never its nice to know im not alone well thats it good bye
Mobius is really rare. Here in Sweden we are 9 000 000 people and we are 40-50 people with Mobius. Mobius affects (almost always) only one person in a family. I go to a normal school too and I'm the only one with it in my school (as far as I know ;) ). I didn't use to talk about it either but now I do. So people can understand. You're not alone :) There are organisations for Mobius Syndrome. Look them up if you wanna meet others with Mobius :)
Hello..Have you had your smile surgery yet?? I had it done in 1996 and 1998. With great results. But my problem now is that with age, the paralyzed side of my face (right) is drooping. I am trying to get my insurance company to pay for the "static sling" procedure and also have a gold weight placed in my right eyelid to help my eye close. They turned me down once, saying that the procedure was "cosmetic." We are appealing the decision.
Whatever trouble you have with facial expressions, your eyes more than make up for it. You are a very attractive young lady, and do not ever let anyone tell you otherwise! I will smile at a stranger today just for you.
@mrsxxsomeone Hi :) Before I was really shy. As you can se in this video, in the beginning I didn't dare to show my face. I'd like to talk to a girl like you :)
My name is Catherine and I have mobius as well. My sister, mother, grandmother and my nephews and niece have it as well....I wish you well in your surgury....Nice to meet you!!!
Linen15, you are a beautiful young woman and you should never be ashamed of showing your "whole" face. Be proud of the way you are, cause it does make you more special than the rest of us. Being special in your own way is what makes you UNIQUE... stay real.
Linen15, you are a beautiful young woman and you should never be ashamed of showing your "whole" face. Be proud of the way you are, cause it does make you more special than the rest of us. Being special in your own way is what makes you UNIQUE... stay real.
Linen15, you are a beautiful young woman and you should never be ashamed of showing your "whole" face. Be proud of the way you are, cause it does make you more special than the rest of us. Being special in your own way is what makes you UNIQUE... stay real.
Linen15, you are a beautiful young woman and you should never be ashamed of showing your "whole" face. Be proud of the way you are, cause it does make you more special than the rest of us. Being special in your own way is what makes you UNIQUE... stay real.
Linen15, you are a beautiful young woman and you should never be ashamed of showing your "whole" face. Be proud of the way you are, cause it does make you more special than the rest of us. Being special in your own way is what makes you UNIQUE... stay real.
Linen15, you are a beautiful young woman and you should never be ashamed of showing your "whole" face. Be proud of the way you are, cause it does make you more special than the rest of us. Being special in your own way is what makes you UNIQUE... stay real.
Linen15, you are a beautiful young woman and you should never be ashamed of showing your "whole" face. Be proud of the way you are, cause it does make you more special than the rest of us. Being special in your own way is what makes you UNIQUE... stay real.
Show all of your face, don't hide be proud of who u are. Do not let people make u hide. If they have a problem with it that is their problem not yours. Do not sell your self short because of other people ignorance. Use your full potential. OK, that is coming from a person who have mobius syndrome and I do not sell my self short for NO ONE and I have confidence a lot of it too. So do not sell your self short, be who u are not what people want u to be OK.
@Linen15 Yes, I do but I do not let it stop me AT ALL. I have a lot friends too. Do not let ignorant society stop you from living AT ALL. Always remember, at the end of the day long as you have your family you are fine. Do not take it as I am saying be ignorant back. I am saying go out and live your life make friends and be part of society. Just do not let the ignorant ones make you ball up. Communicate that with your family and friends that you trust OK.
Precis ^_^ Skriv typ ALLA möjliga ord du kan komma på som har minsta koppling :P Typ att du är svensk, blå ögon, sweden, swedish, swede, svartvit, black, white osv liksom allt ^^
:D SWEDISH woo. you have a cute accent :3 I had that surgery when I was 5... annnddddd you speak really well for having the syndrome. YES I have the syndrome. and yesh it is soo annoying. but whatever. soo...yeah.
laurendd1123 5 months ago
@laurendd1123 Haha, do you like Sweden? :P Haha, thank you ^^ But I spoke very weird on this vid. because I was sooo nervous :P I think (and hope :P) I sound a bit better now :P Oh, you do? When you were five? Wow, do you remember anything from it? Haha ^^
Linen15 4 months ago
Hello - thanks so much for this. My darling 5 year old daughter has moebius syndrome, so as soon as she is old enough, we will get you two in contact so you can talk about your experiences. We live in Australia and are lucky to live in the city that is home to the Caniofacial Unit - we are also looking at what surgeries are available, so I'm keen to know how effective your surgery has been (if you've had the smile surgery yet). Thanks again for this. Also, how did you cope socially at school?
LizDMurf 5 months ago
@LizDMurf Hi :) This monday coming up, will be one year since my surgery and I've had a lot of changes. I can smile but I am still working on learning it. Allthough my life has improved sooo much since the surgery, just being able to move my cheeks makes it all so much worth it. Just one thing though, let your daughter be old enough to make any dessisions about surgerys herself. Because my parents let me decide it all by myself and I think that is for the best. I coped very well at school :)
Linen15 4 months ago
Hey, My name is Kelly, I also have Mobius..I am 37 yr old female in Mich. I have lived my life and currently still do(haha..obviously)..this doesnt stop me. Hope you all can do what you want to also.. I am here for help and support. Text me 586-698-8250. Always here to make friends..
TwiggyletteRamirez 6 months ago
@TwiggyletteRamirez Hi :) No, I don't let it stop me either :) I am a really happy person and won't let such a small thing as mobius stop me ^^ Oh, We don't live in the same country so texting would be very expensive, sorry :P
Linen15 4 months ago
I think you are wonderful. Hi, I'm James, I was born with Mobius, yes it's annoying, but it doesn't stop us being ourselves. Live your life! Can I have your number?
casualjc 10 months ago
@casualjc Hi, thanks. :) My number? Do we even live in the same country? :P
Linen15 10 months ago
I like your video, you are very intelligent. I appriciate your courage!
I'm from Uruguay and I talk with someone with the same syndrome u tell us
Murtherion 11 months ago
This has been flagged as spam show
Thank you for sharing your experience of Mobius syndrome. I hope you get to meet genuine people with Mobius. I had just been reading a report by Paul Ekman (for university purposes)who mentioned Mobius. I had not heard of it before. Paul Ekman stated in his report (Ekman, Chapter 3 Emotions, 1999) that people with Mobius report great difficulty in developing and maintaining even causal relationships. Is this true I wonder as it was Paul Ekman's experience?
nosrednayrrek 1 year ago
Thank you for sharing your experience of Mobius syndrome. I hope you get to meet genuine people with Mobius. I had just been reading a report by Paul Ekman (for university purposes)who mentioned Mobius. I had not heard of it before. Paul Ekman stated in his report (Ekman, Chapter 3 Emotions, 1999) that people with Mobius report great difficulty in developing and maintaining even causal relationships. Is this true I wonder as it was Paul Ekman's experience?
nosrednayrrek 1 year ago
@nosrednayrrek I have never heard of people with mobius having difficulty with it. And I have never experienced it myself
Linen15 1 year ago
Great to hear this is not your experience regarding friendships. I think Paul Ekman's report is available on google if you or others were interested. I'd be interested in other people's comments regarding Paul Ekman's statement that "people with Mobius report great difficulty in developing and maintaining even casual relationships". It is important to question even peer reviewed articles and noted psychologists/people.
nosrednayrrek 1 year ago
@nosrednayrrek Yes, I'm interested as well. I've been looking at some of his facial feedback work which suggests that the muscles on the face fire emotions, rather than the other way around. Would be an interesting research project to amass data on this and test that idea empirically.
LizDMurf 5 months ago
Hi I have a one month and was diagnosed with the syndrome also like to know I can do to help care or therapies that can be as I'm going to be much need agradesere feed but I have to be holding their cheeks to make good suction to say something
gleener00 1 year ago
@gleener00 When I was a baby my mom couldn't feed me 'normaly' so I got to drink some sort of formula
Linen15 1 year ago
you are so brave, may god bless u always...stay strong.
rickettsiae 1 year ago
@rickettsiae Thank you :)
Linen15 1 year ago
Hi - I didn't know anything about Mobius syndrome before. Thank you for explaining it so well - especially in your (presumably) 2nd language. I wish you well and hope you have recovered from your operation.
fields1900 1 year ago
@fields1900 You're welcome ^^ Yes, it's mu 2nd language (I speak very bad in this video though. I'm waaaay better now ;) ) Thanks :)
Linen15 1 year ago
My three year daughter has moebius syndrome, it has been a long road so far with many visits to childrens hostpital. she sees four dif therapyst a week and has had one surgery so far on her eyes. I love my daughter very much, and her big sister is very patient with her. We are part of the moebius syndrome foundation here in the states. I hope as my daughter gets older yours and everyone else who has posted their lives with moebius syndrome are here will be inpiring to her, God bless
vampiricus 1 year ago
@vampiricus We have a foundation here too, that I'm part of. Hope your daughter are feeling well :)
Linen15 1 year ago
This has been flagged as spam show
Hello everyone,
I wanted to share that I also have Moebius Syndrome, and I feel better knowing that I am not the only one going through this, and there are people who can understand me from experience. I would enjoy getting to know you guys. The e-mail that I check most often is lagrima_227@hotmail.com. I would like to hear from you guys. TALK TO YA'LL SOON!
lagrima227 1 year ago
This has been flagged as spam show
Hello everyone,
I wanted to share that I also have Moebius Syndrome, and I feel better knowing that I am not the only one going through this, and there are people who can understand me from experience. I would enjoy getting to know you guys. The e-mail that I check most often is lagrima_227@hotmail.com. I would like to hear from you guys. TALK TO YA'LL SOON!
lagrima227 1 year ago
its ok i dont have mobius syndrome and dont know much about it and i hope that i would later on . when i read all of your comments and watch your videos ,and by the way i really think your pretty. just so you know i am 10 years old and i wish that when grow up i would have a cure to mobius syndrome. Bye!
MegaAhmaddd 1 year ago
hi im 17 and i have moebius too i cant move my eyes side to side only up and down
anyway can i ask how rare is moebius? because i think im the only one in my family who has it i go to a nomal high school so somthimes i feel like im the only one who has moebius and i dont talk about my moebius almost never its nice to know im not alone well thats it good bye
home227 1 year ago
@home227 Hi
Mobius is really rare. Here in Sweden we are 9 000 000 people and we are 40-50 people with Mobius. Mobius affects (almost always) only one person in a family. I go to a normal school too and I'm the only one with it in my school (as far as I know ;) ). I didn't use to talk about it either but now I do. So people can understand. You're not alone :) There are organisations for Mobius Syndrome. Look them up if you wanna meet others with Mobius :)
Linen15 1 year ago
Hello..Have you had your smile surgery yet?? I had it done in 1996 and 1998. With great results. But my problem now is that with age, the paralyzed side of my face (right) is drooping. I am trying to get my insurance company to pay for the "static sling" procedure and also have a gold weight placed in my right eyelid to help my eye close. They turned me down once, saying that the procedure was "cosmetic." We are appealing the decision.
ezymk69 1 year ago
@ezymk69 Yes, I had it done last monday :) So I'm home recovering now :)
Oh, what surgery did you have? The same as me? How mean, they should give it to you!
Linen15 1 year ago
Caroline,
Whatever trouble you have with facial expressions, your eyes more than make up for it. You are a very attractive young lady, and do not ever let anyone tell you otherwise! I will smile at a stranger today just for you.
Greetings from SC, USA ... Lewis and Gina
FishnMusician 1 year ago
@FishnMusician Thank you very much. How cute. That made me very happy. Tell me if they smiled back :)
Linen15 1 year ago
Hi Caroline,
your so open about this.
i have it to and i never dare to do this like you do.
if you like to contact a girl like me that also have it, than let me know. I'll see it when you answer me, bye
mrsxxsomeone 1 year ago
@mrsxxsomeone Hi :) Before I was really shy. As you can se in this video, in the beginning I didn't dare to show my face. I'd like to talk to a girl like you :)
Linen15 1 year ago
Hello Caroline,
My name is Catherine and I have mobius as well. My sister, mother, grandmother and my nephews and niece have it as well....I wish you well in your surgury....Nice to meet you!!!
Catnoel1210 1 year ago
@Catnoel1210 Hi. I've never heard of more than two people in the same family having mobius. Thank you, Nice to meet you too :)
Linen15 1 year ago
@Linen15 I have never heard of that many people having Moebius in one family either. I would love to know more!
Nanato6kids 1 year ago
@Nanato6kids I would love to know more too!
Linen15 1 year ago
Linen15, you are a beautiful young woman and you should never be ashamed of showing your "whole" face. Be proud of the way you are, cause it does make you more special than the rest of us. Being special in your own way is what makes you UNIQUE... stay real.
ecurry09 1 year ago
Linen15, you are a beautiful young woman and you should never be ashamed of showing your "whole" face. Be proud of the way you are, cause it does make you more special than the rest of us. Being special in your own way is what makes you UNIQUE... stay real.
ecurry09 1 year ago
Linen15, you are a beautiful young woman and you should never be ashamed of showing your "whole" face. Be proud of the way you are, cause it does make you more special than the rest of us. Being special in your own way is what makes you UNIQUE... stay real.
ecurry09 1 year ago
This has been flagged as spam show
Linen15, you are a beautiful young woman and you should never be ashamed of showing your "whole" face. Be proud of the way you are, cause it does make you more special than the rest of us. Being special in your own way is what makes you UNIQUE... stay real.
ecurry09 1 year ago
This has been flagged as spam show
Linen15, you are a beautiful young woman and you should never be ashamed of showing your "whole" face. Be proud of the way you are, cause it does make you more special than the rest of us. Being special in your own way is what makes you UNIQUE... stay real.
ecurry09 1 year ago
This has been flagged as spam show
Linen15, you are a beautiful young woman and you should never be ashamed of showing your "whole" face. Be proud of the way you are, cause it does make you more special than the rest of us. Being special in your own way is what makes you UNIQUE... stay real.
ecurry09 1 year ago
Linen15, you are a beautiful young woman and you should never be ashamed of showing your "whole" face. Be proud of the way you are, cause it does make you more special than the rest of us. Being special in your own way is what makes you UNIQUE... stay real.
ecurry09 1 year ago
@ecurry09 Thank you. I do show my face, in my other videos. :)
Linen15 1 year ago
Show all of your face, don't hide be proud of who u are. Do not let people make u hide. If they have a problem with it that is their problem not yours. Do not sell your self short because of other people ignorance. Use your full potential. OK, that is coming from a person who have mobius syndrome and I do not sell my self short for NO ONE and I have confidence a lot of it too. So do not sell your self short, be who u are not what people want u to be OK.
gamefan4002 2 years ago
Yeah, I know. I'm working on it.
You have it too?
Linen15 2 years ago
@Linen15 Yes, I do but I do not let it stop me AT ALL. I have a lot friends too. Do not let ignorant society stop you from living AT ALL. Always remember, at the end of the day long as you have your family you are fine. Do not take it as I am saying be ignorant back. I am saying go out and live your life make friends and be part of society. Just do not let the ignorant ones make you ball up. Communicate that with your family and friends that you trust OK.
gamefan4002 2 years ago
I don't let it stop me either. Well, maybe sometimes but not that often I've a lot of friends and other close people
Linen15 2 years ago
That is wonderful ;-) keep it up
gamefan4002 2 years ago
I will. You too ;D After the surgery I won't let it stop me at all
Linen15 2 years ago
Precis ^_^ Skriv typ ALLA möjliga ord du kan komma på som har minsta koppling :P Typ att du är svensk, blå ögon, sweden, swedish, swede, svartvit, black, white osv liksom allt ^^
Trilzk 2 years ago
Men bara några få kommer med ju? :O
Linen15 2 years ago
Så ska det inte vara :O Alla ska komma med, hmm. Du har väl komman emellan och sparar ordentligt? ^^
Trilzk 2 years ago
Ja :O Både komman och sparar :O
Linen15 2 years ago
Vad konstigt :O :/
Trilzk 2 years ago
Carro! Gör massa såna här inlägg, det är jättekul ^_^ Men du måste ju ha massa taggar så folk hittar dig!!! =D Jättegulligt ^_^
Trilzk 2 years ago
Vad är taggar? (a) Är det alla de där blåa orden längst ner i videobeskrivningen?
Linen15 2 years ago
Okej, nu är det fixat xP
Linen15 2 years ago