Moebius Syndrome
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- čas přidán 6. 09. 2024
- Moebius Syndrome Awareness day is January 24th, 2012. I have Moebius Syndrome and to do my part in raising awareness, I made a video telling a little bit about it. Making this video and posting it on my facebook is a big deal for me, because I don't really talk about Moebius a lot, even with my close friends.
Thank you so much for sharing this. I have just read about this syndrome for the first time but didn't understand much just through reading.. I really appreciate you taking your time and courage to give us information; it's very valuable.
+Catarina Zidde Just out of curiosity, how did you hear about Moebius syndrome?
I was browsing through this site and ended up reading this article about someone who has it: broadly. vice .com /en_us /article/ saving-face-my-plastic-surgery-at-age-13 (sorry i'm not sure about how to post links here in youtube comments)
I actually came across it because I am studying Optometry and I am being assessed on the different Cranial Nerves and their palsies
Chelsey Thomas I was curious and searched “the rarest diseases” and I searched up each one and on the list was Moebius Syndrome and found this video
your eyes are beautiful. Good luck in life dear!
I am a middle school teacher. I just learned that I will have a new student tomorrow who, among other things, has Moebius syndrome.
Decided to do some homework on my own and educate myself a bit about MS.
Thank you Chelsea. Your video was quite helpful! I like your spirit and moxie!
Now that I have learned more, I will better know how to accommodate my new student.
I will try my best to make her experience in our salsa dance class positive and rewarding, and be certain to be mindful about how other middle-school students treat her.
You rock!
I really hate Moebius Syndrome! I am 45 years old and have had a very difficult time. I was teased throughout grade school, junior high and by the time high school rolled around I just became indifferent to the teasing. I seem to blame everything that goes wrong in my life on Moebius. I too had smile surgery in 1996 and 1998 with very good results. Now that I've gotten older the side of my face that is paralyzed is drooping quite a bit and I cannot get my insurance co to pay to have it lifted. I thought about doing a go fund me to help pay to have the procedure done.
A gofundne page could be a good idea, actually.
Then I have to go public on fb. I just don't know :(
on the bright side, I bet you have much less wrinkles then a typical person your age?
From time to time, I do kind of hate it too. But sometimes when your caught up in something you like, you forget about it. You need to have some hobbies etc.
Dude your video is blowing up! I love you!
Hey guys, that's my best friend!!!! Love you Chels! ♡
I love you toooooo!
AndieofCZcams Friendship goals!!! ❤❤❤❤
YOU ARE AN INSPIRATION. thank you for posting and making this video. Your being is beyond form and our spirit is formless. May you find peace and happiness. sending you my love
Before today, I had never heard of this syndrome. It must be difficult to put yourself out there talking about such a personal topic. The internet can be a vicious place; it's extremely courageous of you to allow your walls to come down in order to educate others. That is true beauty!
Moebius Syndrome or not you are an inspiring, smart and beautiful woman. Thanks for sharing your story and raising awareness... You taught me something today.
I was just reading about Möbius Syndrome and I needed a personal point of view from the perspective of a person dealing with it. This testimony is invaluable, thank you Chelsea, big up to this video from Argentina!
I just came across your picture in my psychology textbook and was hoping I could see how you were doing now and learn more about you, your story, and Moebius Syndrom. Thank you for sharing your story, you're a beautiful, courageous and inspirational woman. (And a super cute little kid in the textbook!)
Hey, I did not know that! Haha, I know I am in some type of Psychology textbook from a class that my aunt took.
I'm just popping up in all kinds of books! :)
But I'm glad that inspired you to look for more information on it, that's awesome! :)
Don't ever let anybody talk you down , you are an inspiration for many. Even 1 person can change the lives of many people !! ( way of thinking / accepting current situation )
I am nowhere near as courageous as you are , showing your own weaknesses on the internet can be a scary thing. But the internet is also the place to connect to many people and show them how to deal with it or give them courage. RESPECT , hope the best for u.
Hi Chelsea, My name is Tim and i'm a pastor. i came across your name and story while preparing for a talk. I had never heard of Moebius Syndrome until then. You did and amazing job telling your story and it helped me to understand what this is about. You have beautiful eyes and a very nice smile. i don't know if it is hard to smile, but none the less, when you do it is beautiful. Keep smiling and may the joy of Jesus and Christmas be with you and your family.
Hi chelsey, I was diagnosed with moebius syndrome when I was younger and had my smile surgery when I was 7 as well. I have never actually seen or met someone with what I have before. I have always felt secluded or different then most because it's so rare and no one has heard of it really. My mom came across your video and then forwarded it on to me. I was so excited to see someone like myself. So thank you for posting this! Your awesome!
Hey! Find me on facebook.com/chelseythomas13 and I can connect you with people that have Moebius (if you want) and may even live near you, depending on where that is. :)
u are incredibly brave and thankyou for spreading awareness and helping people understand this incredibly rare condition. I think its amazing how resiliant and adaptable humans are and this is my main take away from watching your video. GOOD LUCK and thx
Thank you for explaining your condition. I was reading about it but I didn't really understand beyond just the description of the facial characteristics. You are very good at expressing yourself and after I started listening to you I really didn't notice it anymore. I appreciate you taking the time to make this video.
I knew about Bell's Palsy, which affects one side of the face, but did not know about facial expression (smile) but this awareness (for the first time) makes me soooo sad. Be strong, Chelsey.
Thank you for making this video and helping many of us unfamiliar with this condition understand it better.
Thank you for making this video Chelsey! I am 20 and have moebius syndrome as well. It's so wonderful of you to share your experience with it, as it is hard to find a community of support for those with moebius syndrome. I find sharing experiences with others really helps reassure people that there are others who know what they are going through too and can empathize with their troubles. Thank you again for making and publishing this video - I admire your bravery and your passion for helping others :)
I agree.
I have recently been diagnosed with Moebius also... I had a lot of corrective surgeries since birth by different doctors so no one was ever able to piece together what I had till now. Thanks for your video... there are so few people around that have it and talk about it. I appreciate it. You are beautiful.
I realized after I saw this comment that you had sent me a facebook friend request. I may have deleted it because I didn't recognize the name, but I remember your picture now, and you look great! What kind of corrective surgeries did you have? If you don't mind me asking.
Aww, thanks! I had 6 operations on my feet before I was 5 years old because I was born with Club Foot - and I had 3 major operations on my jaw to get my mouth to close. Originally I couldn't move my mouth hardly at all - which led to speech problems and drooling among other things but the operations and years of braces & retainers helped with that luckily. My eyes still will never work right or turn the way they should - but I've got glasses now to help me a little... I still have a lot of random minor problems that tend to go un-noticed by most, like my fingers curve weird, I have horrible vision, my left hip & shoulder don't work right, I have a heart murmur and odd chest wall cavity, and I still have an unusually small mouth with an upturned lip kids sometimes ask about... lol Overall though, it's not the worst thing to have I guess. I would love to talk to others with it, though - since being diagnosed I've been really curious and since it's so rare I can't even find anyone who knows about it let alone has it...
You are absolutely adorable though! It's nice to find another young female out there in the world also dealing with it.
On Facebook, look up the group Moebius Friends 2, and request to join. There are lots of people in the group that would be more than happy to talk to you, myself included. :)
BTW if you didn't have any surgeries you'd be fine.
Hi Chelsey. Thanks for taking the time to make this video. I am a Physical Therapy student and it is so much more helpful to learn about a condition and hear about what it's like from someone that has it instead of just reading about it. You're beautiful :)
Well the good thing about being different is you get to be a lot stronger and wiser than most and learn a lot about the world and people in general.
Thanks for the upload and glad your happy and strong x
Hi Chelsey! My name is Kim and I just wanted to say that your video really inspired me... I was born with Moebius Poland Syndrome, so that's pretty much two complications in one. xD
I struggled through it emotionally when I was in middle school. I'm about to turn 18 and I've learned to accept what I have throughout my years growing up and not to dwell on it at all. Thank you so much for sharing this wonderful video with the world and teaching both those who have never came across such a syndrome and to those who actually have it. You're very beautiful and I hope your future will be as bright as your smile! :3
Chelsey...my eyes got teary watching this, not because i feel sorry for you, but because you are such a courageous girl with an awesome soul, never think its the outside of a person that matters, the inside is the most important and is what God looks at.
Sometimes i feel a bit depressed about life because of certain physical conditions i suffer from but when i think of you and people like you all of that goes away and i get motivated to live life to the fullest.
Thank you
I found your video from a friends Facebook who jeans a daughter with Moebius. Thanks for posting this! It has been so informative. Your eyes are so pretty. I have to agree with the comment I read below, you are a strong woman and so beautiful.
I remember reading about you when I was sixteen. You were such an inspiration to me and you still are. I hope you're well 💜.
That makes me miserable. I have it and I am very healthy and probably going to live a full life!
Hayley Gudson, what makes you miserable?
Yes I was very blonde as a child (natural hair color), so it was probably me. It still seems so crazy to me that my picture is in all of these text books and what not.
You are beautiful. I just read your story in Chicken Noodle Soup for the Parents Soul. You are an amazing person. I wish you the very best in all you do. God Bless you!!!
Tears.... So, much respect for you. Absolute prayers for you. You are beautiful! Your courage brings me to tears. 🙏🏼
Thank you for this informative video! I actually came here to learn how to pronounce Mobius - as in Math, and I hadnt even heard of this syndrome, thank you for explaining so well and for showing the world how the syndrome affects you. very courageous :)
You are a very beautiful and brave woman. I appreciate you making this video, as it could offer some courage to parents who have kids with Moebius syndrome and don't know what to expect when it comes to the difficulties faced. Your speech is quite good and I can understand you really well (coming from a non-native English speaker). I am sure you have achieved a lot in your life and will continue to do so. I applaud you!
thanks for posting this video, it's hard to put yourself out there like that.
Your amazing don't let people hurt you! You are beautiful and a great inspiration to many young disabled children out there! Keep up the great work - you'll go well in life! ❤️
Thank you! I don't think of myself as disabled, because I've always been able to do everything I've wanted to do in life. :)
Chelsey Thomas Okay. sorry :)
Thank you Chelsey! I am a medical student and you just taught me something. :)
I want your hair. That's all I could pay attention to in the video!
HIChelsey. This is a very reflective night for me...You are a truely inspirational, lovely girl!! Thank You Sweetie!!!
You are an amazing person Chelsey for being able to make a video about this and inform people about this. I didn't know anything about Moebius Syndrome before watching this video and I want to thank you so much for teaching me about it. Don't ever forget how awesome you are.
Thank you for sharing this information , I know someone that has the same thing, She can't smile but she can laugh and be sad, When I heard her laugh I was very impressed , I thought she communicated with sound more than the average person. You probably work your hands with grips or something to strengthen them and make them more adaptable to daily use. God Bless You for your courage and helpfulness for others too.
My eldest daughter has Moebius, thank you for your input. and are a beautiful young lady
Take care
I don't know about you guys, but I understood everything she was saying throughout the whole video word-for-word.
hey chelsey awesome job your speech is wonderful. I have moebius syndrome myself and it takes alot of courage to do what you do. keep on being yourself and awesome. You have great eyes too. I am sure you will accomplish wonderful things.
Thank you! I've worked on my speech a lot over the years. I've learned to enunciate and speak slower, which improves my speech a lot. :)
I was definitely nervous about putting this video up. Mostly because people just love to leave rude comments on videos, I'm surprised this video hasn't received any.
Hey Chelsey, didn't know if you were aware but you appear in one of my college textbooks (well pictures do anyway) and that is what inspired me to seek more information on Moebius syndrome. The book is "Biological Psychology 11th ed."
Thanks for explaining what it is. I just heard of it. my daughter was born with bicoronalcraniosynostosis, but has not been officially diagnosed with a syndrome. Wish you well.
I’m 56 now and when I was young it did bother me a lot I’m lucky that my speech is clear and I am told my voice is always cheerful on the plus side I don’t have wrinkles
Hey Chelsey, I just rewatched your video, and you amaze me with your courage to put yourself out there. I made a video several years ago and never uploaded it out of fear of those potential nasty comments that get left. But after seeing this I think I'll try again. Our story needs to be heard Thanks again, Teri Brown Goodwin
Honestly, that was my biggest fear too, the nasty comments. Surprisingly, I have't received any. You should definitely upload your video, and if you wanted to, you could disable the comments section so people cannot comment on it. :)
Thank you for sharing your story. I did not know about Mobeius. I think you’re incredibly courageous to make this vlog. I don’t know your age.. wonder what you have decided to study in school. I hope you’re surrounded by loving and supportive friends and family.
I wish you strength to get through this difficult trial of life. Only you knows how hard this syndrome can be. You probably ask yourself once a while, why did it happen to you? I believe that God believes in you that you are a very strong woman. God is with you and if you can't cope with your feelings talk to somebody or talk to Him. It's not that I want to sound like a Jehova or something, but i Just want to give you my support and let you know that I respect you for what you go through life on your own.. That being said means that you have to be a strong person for yourself.. And you Are gorgeous girl! ps; Those eyes you have there, are really something! Lots of love..
I have möbius syndrome too I hate
It I get teased and bullied I do have a mild case of it so it isn't to bad but I can't smile my real smile endless I want to get laughed at most people say " just love yourself " but it's hard when I feel like no one else does
Thanks...I agree...I know I haven't had the easiest time in life, but I'm definitely thankful for what I have and I know that things could be a lot worse than they are.
Hello Chelsey! I am just reading your mother's story in Chicken Soup for the Parents soul. ♡
Thank you for sharing this!! You embolden the strongest of all of us and you're a very beautiful women. :)
I'm donating to the Moebius syndrome foundation right now and others should see this.
my godson jacob was bron with moebius syndrome he passed away last year.. you are beautiful much love to you xo
Aw thank you, that's so nice of you to say!!
God Bless you and always strive and live for your dreams cause like you, I am a human being and we are all here on this Earth for something. If you have dreams, chase them, don't ever let someone or anything stand in your way! You can do anything!
I have Moebius as well. Thank you for the video
Your courage is impressive. May the Infinite bless you unto infinity.
Thank you Chelsea for bringing an awareness to Moebius Syndrome :)
you're beautiful! thank you for this! take care, and stay strong. you inspire me.
You speak amazingly well. You must have worked very hard to do that. As I compose this comment, hearing you again, I'm not even having help by reading your lips. I just hear you, and you are perfectly understandable. And yes, you are very pretty. Good luck with everything.
Thank you! :) Reading my lips would not be helpful, as they don't move in the way a "normal" speaker's due. But yes, I have worked hard at improving my speech. Aside from my hands, it's the thing I've always been most insecure about.
You rock, and this video rocks.
I hadn't heard of this before today so I searched youtube and found you! Thank you for explaining it to us and raising awareness. Great video! :)
Chelsey, You are an amazing, beautiful child of God!
Thank you for sharing, I've only recently heard about this syndrome.
Thank you for educating us on this condition! You are a very impressive young woman!
You are brilliant. Thank you for sharing your experiences. And I understood every word! I thought you were very clear.
Thank you for sharing this video. I wanted to see what the physical effects actually are and it's very helpful to see you. And I also think you are brave for exposing yourself to potential criticism on here. Keep it up!
You're a beautiful person Chelsea ❤️ Much love to you. Hope you are doing great in life!
Thanks...I don't really consider myself to have problems...I'm able to do anything I've ever wanted to do, even if I just have to do it a little differently.
Thanks for the encouragement though! :)
Fair play Chelsea. Doing this video must have helped you a lot plus makes other people understand the disability. I don't usually comment on videos but i couldn,t help myself
Thanks for the video. I had always heard of this but had no idea what it actually was like. Very interesting to have heard your story. I hope one day you upload more videos i will defenitely love to watch them. Con mucho amor te deseo lo mejor. I wish for you the best this world has to offer. Y q ojos tan bonitos tienes.
Hi Chelsey. A) I think you're beautiful, and B) Thanks for sharing your story. I just saw someone post something about this on Facebook and was curious as to what it is. Your video is helping me to have a better understanding, and I just wanted to say that you are seriously an inspiration! :)
Amazing courage! Thank you for sharing your story. Sending love from me in Scotland, UK.
Read your story as a kid. Glad you are well!
im like you i have mobius. and since i was a kid i was bullied.. and i cannot smile like you. the other half of my face i cannot move it.. i hope that people would just understand my condition
This was so amazing for you to do in order for others to understand! I was completely amazed by the strength that you have and you are a beautiful girl! I am going to school for nursing and love learning about disorders etc! thanks for posting this and amzing vid!
You're in my Psychology textbook for university too! And I also looked you up so I could learn more about Moebius syndrome. Happy you were able to get the surgery you did, and thanks so much for sharing your story! You're awesome!! :)
--- continuation--- Is it okay if you make another video giving a short word (1 minute maximum) for children who has the same condition? It would be very inspirational for children who has moebius syndrome here in our country. I would love to hear from you soon. Thank you very much.
@JDMJDM6262 thank you that's so nice of you to say!!
you are a strong person.......and i thought i had problems......good luck and stay strong
You are such a beautiful girl! Keep smiling that gorgeous smile!
Thank you for sharing your story.
Thanks, Chelsea, for the video. May I tell you that you have lovely eyes and, yes, a lovely smile!
awesome job chelsey! cant believe weve been friends for 12 years and i still learned a few things. ps you look very pretty in the video
This was such an amazing video. Thank you so much for sharing, you're a beautiful person :)
thank you for sharing!! i loved your nail polish!! and its great how well you speak and its clear =D
You've got beautiful eyes. I don't know why but I couldn't help but notice them.
Thank you for your video. You are a brave and beautiful person!
Thank you for sharing Chelsey
Aw, that's so sweet, thank you. :)
Your inner smile shines is so much more visibile than any facial smile! :)))
Well done girllllll! Great video helping to raise awareness... Thanks a lot! XX
WHOEVER HAS MOBIUS GO TO MOBIUS SYDROME FOUNDATION I HAVE IT BUT IM LUCKY BECAUSE ONLY MY FEET ARE CURVED AND I WALK ON THE SIDE AND ONLY CANNOT SMILE CHELSEY YOU ARE AMAZING!!!
Thank you very much for sharing your story with the world Chelsey. God bless you, you're an angel :)
you are a beautiful girl and you speak lovely, be proud of yourself... i was proud to watch your video x
@Jessica Lewis i have polands syndrome but it differs from person to person. I for example am a rarity i have a small malformed right hand and a missing pec muscle. Iam rare as males are more common to have this defect and also the defect is more common on the left side. This can also affect toes. My fingers are webbed. Wiki can give you more in depth info
You're still beautiful the way you are
I never smile. I guess I take it for granted
Thanks for all the information. You did a great job!
You are normal goegeous. Who says anyone isnt normal? I love your eyes there pretty and god has blessed you with a syndrome that only makes you stronger as a person so keep your head up and smile cause theres so much to smile about babygirl. :) Dont let anyone tell you diffrently they are only trying to bring you down which means your above them. Stay strong beautiful:)
And I have also this syndrome. Really. Good luck ahead
Great vid! I hope you make more!