my disability - AMC (Arthrogryposis Multiplex Congenita) [CC]
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- Опубликовано: 15 сен 2024
- UPDATED, MUCH MORE DETAILED VERSION OF THIS VIDEO: • My disability - AMC (a...
Hi! In this video, I'm telling you a bit about my disability - Arthrogryposis Multiplex Congenita (AMC).
Check out my social media too:
Instagram: @99.able_
Twitter: @OlaMroczek_
I also have AMC in my hands and feet (I'm 17), I was very lucky as when i was still a baby it was mostly fixed, and I had only seen mild inconveniences in my life like not being able to balance when walking or struggling to write etc. However now I'ts really affecting me. I picked up 2 hobbies at once, motorcycling and piano and combined they've really hurt my hand. I didn't take my disability into account at first and thought it was just normal I struggled so much. I now realise I need to just approach these things differently :) Thanks for the video it's nice to see others with it.
It's great to hear that disability doesn't affect you too much!
I have amc too! X
I have this too, really amazing to hear someone talk about it.
I have amc toooo x
Same here!..
Hi Ola
Its so good to see you do everything on your own and so positive.
My son has AMC too and he’s 5 months. I would love to hear more about it. Maybe you could do a Q n A with your parents. What they did. Which exercizes etc. It will help me a lot :)
Hi! I'm hoping to add more videos soon :) I'll definitely think about a Q&A, my parents don't speak English too well but we can figure something out, thank you for your suggestion! What I can tell you now is that from birth till I was 3 years old, I had exercises even 5 times a day (with specialists and with my dad who got a special training). When I was older there was less and less exercises and now I don't have any as daily life activities are enough of an exercise
99% able
Thank you so much for ur reply :) can u tell me how long did the exercizes last? Like was it 10minsx5 or ? Where do you live?
@@BegumAtif The exercises were usually around an hour, so 4-5h a day of exercises and massages. When I was in kindergarten it was changed to around 2-3h a day, then in primary school to around 5-7h a week and in middle/high school to around 3-4h a week. What is important is that when I went to primary school (7yo) I also started swimming classes (around 3h a week) as they're one of the best exercises for people with AMC as your body is able to do way more things when you're in the water and your muscles work in a different way.
I also had 3 surgeries (1 on my feet and 2 on my hands) but most progress in my abilities was definitely achieved by exercises, massages, swimming and general daily life activities. My parents were always trying to give me as much independence as possible so that I was able to do everything in my own way. They were, of course, helping me with a lot of things but were also encouraging me to do most things on my own. I do a lot of things in a "weird" way but it's a way that works for me best. From my and my friends' with AMC experience, I can tell you that we're always able to find a way to do something on our own. It may take more time, but there's always a way so, when your son is older, please try to encourage him to be as independent as possible as later it would help him in his adult life!
I am from Warsaw, Poland but I currently live in England. All of my surgeries were in France though. I hope that helps!
99% able i cant thank you enough for such a detailed answer 💕 thank you so much
Its always so motivating to hear other peoples journeys then what doctors might tell you.
I hope you all the best in your life 💙
Stat blessed🤲🏻
@@BegumAtif thank you! I'm sending a lot of hugs to your son x
As a grown @ss man this brought tears to my eyes. You are awesome, very brave and i commend you. I have a condition called spondylolisthesis in my back. It's not noticeable to people that don't know. But i had a big surgery called a single fusion on my l4, and l5 vertebrae. I'm glad you made this video to explain this. My friends daughter has the same condition as you so this was very informative. ❤
It makes me happy to see someone with the same struggle as me to put this out for the world. Though my condition is less severe as yours (I have arthrogryposis in both elbows) it still has affected me everyday since around middle school. Growing up as a guy, my condition has taken many hits to my “manhood” and my mental health, but I’ve done many things to improve those things such as playing American football for many years and weight lifting as well. There have been plenty of times where I looked in the mirror, mad at the world for the way I looked and mental breakdowns as well. I can also 100% relate to wearing longsleeves to cover up my insecurity. You are very brave in my eyes to post this video as I know I wouldn’t have the courage to do the same. Thank you for raising awareness, it helps people like myself connect with others and share the same experiences.
Thank you so much for this comment and for opening up about your struggles! I'm so glad you found a way to fight with your insecurities. And thank you, yes, it wasn't too easy at the beginning to publish this video, I'm not even sure why I finally did that, but it changed my life for so much better! I've met many amazing people who messaged me after seeing it and it also made me way more confident and less insecure about my disability. It's difficult to stop hiding ourselves but it's so worth it
99% able I couldn’t have put it any better! Keep doing your thing and don’t let anyone’s judgement put you down! We are a rare breed and need to embrace it for the better 👍🏻
It’s so nice to hear your story! I have amc , arthrogryposis too :)
Hope to see more vids soon! Maybe like a get ready with me or day in my life vid. Lots of love ❤
Hi! Thank you for your lovely comment xx This channel was started for my university assignment but I'll make sure to upload more after exams in January!
you are awesome! and very strong girl
i wish you continue on your youtube channel and vlog your daily life
let us see you more please
because you inspired me
all love.
Thank you so much! I started this channel as a part of my university assignment and didn't plan to post more but I'll make sure to do that in a few weeks after exams as I got a lot of great comments
You know, you're really beautiful. I don't really pay attention to those other things, there isn't anything that we can't around. But, I just wanted to affirm to you.. you're freaking gorgeous
Hi Ola. My boyfriend is 73 and has arthrogryposis. He's had a successful and fulfilling life. You are a lovely young lady and I know you will too. We would love to correspond with you, but if you don't care to, that's fine too. Best wishes, Mike and Elise
Hi Elise! Thanks for commenting! You can always email me on 99percentable@gmail.com. I'd love to hear from you!
@@jojosworld9649 Hello Jojo. This is such a strange coincidence, but Mike passed away last Saturday. It had nothing to do with his arthrogryposis. I wish you could have talked to him.
@@hawbydawg I am so sorry for your loss. My prayers and thoughts are with you and yours at this time.
Hey. My name is Myron I am from Texas I also have AMC to but mine is a little bit different i also can't walk I've never really met anyone like us because where very special people maybe we could get to know each other. 😊❤
Hi! I'd love to talk :) Drop me a message on Instagram or Twitter!
I also have arthogryposis, amoyplasia. I have to wear leg callipers as I can’t walk it great to see your story and hear more people discussing this as I feel like no one ever talks about it or even knows what it is to begin with. Great video xxx
@@sophieandmakeup7157 thanks Sophie!
This is so cool! I have AMC and OI (Osteogenesis Imperfecta - or brittle bone disease) and I've only met one person ever who's had it. So coming across you and your positive video is so cool. :)
thanks! I'm glad you liked it :)
Hi, firstly I congratulate to you for that you seem very strong. That's wonderful. Secondly, I have AMC disease too. Also, I have scoliosis. Yes really thats diseases get difficult to our life and we maybe lose all taste of the world.
On the other hand, you dont be recluse because of this disease but someones who are same to us can want to get away from lively life. This feeling which got notice that you are different from others should be destroyed by us but thats difficult.
I wish they and I could be as positive as you.
Finally, I request to your a little advices.
Have a nice life always lady !
thank you for your lovely comment!
merhabaaa bende artrogripozis hastasıyım :) eğer twitter’ın varsa oradan sohbet etmek isterim, çünkü hiç aynı hastalığa sahip bir arkadaşım olmamıştıı :))
Awh! It am excited to hear someone say this, Ty because I also have arthrogryposis :))
Hi, I'm Diego from Argentina, and i have this condition too, but mostly in my legs and hips. Can't walk, never did, but that didn't stopped me for living, at 18 I moved to another city from my parents house and studied at college, now I work as a programmer. Nothing interesting to say besides I'm glad for you for make this channel to talk and show about it. If any time do u wanna have a chat or something, you can find me in social media or twitch channel whit this same nick, greetings!
Thanks for your comment Diego!
Hey I have arthrogryposis myself how did you do your videos I want my channel to be about arthrogryposis and my dog I'm learning piano and want to share them
Hi! I'm studying Journalism so I have access to cameras and other video equipment but I'm sure you could just use your phone to film videos if you don't have a camera! Good luck with filming and please, send me links to your videos when you create them! x
omg thank u for your videos!! u r soooo cute!!
Thank you for watching and commenting! xx
You’re not labeled as a disabled person you’re simply a person with a disability. Know that. You also have beautiful eyes!
Hi, thank you so much for your kind comment! However, I prefer to use an identity-first language so I proudly call myself a disabled person and not a person with a disability :) Thanks though!
Informative and nice!
Hi I also have Arthrogryposis but and it is true without a sweater no one notices I have it. However mine is different my hands are small but not that curved. The only curved part is my elbow. So my arms are curved. When I was little like around 2-11 I couldn’t see what was wrong with me. I would always think too myself why do I go to the doctors a lot and why do adults and other bigger kids look at me weird. When I was younger I didn’t care because I didn’t know. Now that I care about my looks and how people treat me I don’t like myself. Both me and my older brother have this. He always wears sweater as simple as going outside the house even when it is hot. The time I started wearing a sweater all the time is actually right now because when I started 7th grade I new what was wrong with my hands I could see the curve as. However one time at lunch I took off my sweater. Nobody said anything I don’t know if anyone noticed or if anyone was nervous to tell me about how my arms looked. However one of my friends I was going to hug saw my arms and said “Eeew your elbow” I have to admit I felt bad because no one ever said that to me before. Yeah I might’ve gotten looked at by other people but no one ever said that out loud. What embarrassed me the most was that my friend is loud and well very one in the hall heard her and turned to look at me so I just crossed my arms. I now wear sweaters all the time except at home. I always want clothes with long sleeves and I always want to wear a sweater. Even though I want to take it off. For my birthdays I didn’t want dresses as they have short sleeves but my mom doesn’t understand what I feel as I never really ever talked about it with her. When I do she says some people have a worse disability. But then I say that some people don’t even know they have a disability so they don’t feel bad when people look at them weirdly. Thank you for showing your Arthrogryposis to
The world it is something I am scared to do please give me advice on how to cope with it. Can you tell me the excersises you do to progress with the AMC.
Hi Michelle, it's so lovely to hear from you! I understand you completely with long sleeves, I remember looking for my prom dress for AGES because I couldn't find one that would fit me and have long sleeves (I ended up having one made especially for me). But I've realised that I really don't want to live that way and I've gradually started being more open about showing my disability. I think creating this video made me extremely confident and I was so proud of myself when I published it. I know it really isn't easy to believe and to trust people but I'm sure that your best friends don't mind your disability and maybe you could try talking to them about it more? It could help you get used to talking about it in general. I also get that your mom doesn't understand everything you feel, mine didn't either and it took many long talks to explain her everything but it was more than worth it as she's completely on my side now, knows what I feel and helps me be even more confident! And about exercises, it's different with everybody, of course, but what I was doing for most of my life to extend my abilities was swimming. It's also another place that you can go to practise your confidence (as you can't wear a long sleeve when swimming haha) and it could help your general health too so I think it's great! We should definitely have more representation of people with AMC or similar disabilities. If you have an Instagram account, you should check out @rvbyallegra. They also have AMC and they proudly show their beautiful body!
99% able thank you so much for commenting back. I really needed a talk with someone who is passing through the same as me. I don’t really know people who have AMC except my brother so it will be really nice to see the people on Instagram. I want to tell my friends and they already know I got surgery on my wrist but I don’t think they have noticed the curved part as I always wear sweaters. I am so grateful that you responded back. I really wanted to hear from you and how you dealt with it. Now I want to show my true self to the world and not being afraid to wear dresses and short sleeved shirts. Thank you for hearing me out.
If you want to talk, you can always message me on Instagram! I’ve just set up a new one so there’s nothing on it just yet but I’m planning to start posting things there. It’s @99.able_ and it would be lovely to hear from you! x
99% able thank you I’ll definitely check it out
It’s so lovely to hear your story:) I have arthrogryposis too x
lovely girl ! greetings fom germany
GIRL WHERE IS THE STRING FROM YOUR HOODIE, I AM DEEPLY DISTURBED BY THOSE EMPTY HOLES MSSING A STRING
I bought it like that hahah I hate strings because they're never equal so I just prefer it that way lol
99% able oh god an actual response? This is great, and i love the fact my first youtuber response was about me being botherd by a lack of hoodie string...just found your channel via molly burke and decided to check it out. Personally i have a very very mild disability of a cyst in my brain that affects my balance and learning and stuff and cause it’s not visable at all i always feel bad skipping gym class and getting special extra time to return math homework and stuff cause nobody knows i have some actual issues with some stuff so the youtube dissability community is a fun place to visit every now and again. I might just stay :) (and prepare myself for more missing hoodie strings)
@@lpsfoxstar8454 I love the fact that the first person in my life to call me a 'youtuber' is bothered by my hoodie string 😂 no, but seriously, thanks for checking out my channel! And yeah, I get what you mean, I love RUclips disability community because it's so so supportive and you can see so many people with different disabilities having similar issues and I find it kind of making me feel more okay with myself. And don't worry! I think it's the only hoodie without strings that I own but it's probably my favourite one 😅 and if you stay here (which I'd love!) please don't watch my old videos but new ones hahah old ones have kind of a bad quality lol
99% able that’s great Xd, also watching another video of yours, the i am not my disability one and figured you’d like to know an awnser to your question. Me personally i found molly by shane dawson, checked her out due to her disability and after i had my curiousity filled in like a week or something i stayed due to her personality and i feel like that happens alot where people come for your disability but stay for you.
@@lpsfoxstar8454 it was similar with Molly for me but I actually found her because her video was suggested to me about 2 years back and I got to know Shane through her, I've never heard of him before I've watched their videos! But yeah, i probably clicked on her video because of her blindness but now I just love watching her for her personality! And thanks for answering my question btw, not a lot of people do that xd
❤️!!!
Thank you for sharing ;p
Oh you don't look weird at all, you are lovely!
Merhaba bende bu hastalığa (16)sahibim
Ellerimde, bileklerimde, iki bacağımda hastalıktan etkileniyor maalesef bisiklet süremiyecek kadar rahatsızım iki yıl önce skolyoz teşhiside koyuldu. Bir az yorgunum ve yorumlarda bir şeyleri başaran insanları görünce mutlu oldum teşekkür ederim. Hayallerimi gerçekleçtiricem.
I translated your comment so I hope I understood it well :)
I'm glad you enjoyed my video and I'm crossing my fingers for you making your dreams come true!
I can't ride a bike either ;)
İnşallah hayallerinize kavuşursunuz 🙏
Cześć Ola, może dodasz polskie napisy do swoich pozostałych filmów? :) jako niesłysząca tylko czytam. Wszystko co opisujesz jest ciekawe i "oswaja" ludzi nieznających tematu artrogrypozy. Nie zawsze można zapytać wprost "o co tu chodzi", bo nie zawsze wypada lub ktoś po prostu może problem z mówieniem na ten temat. Fajnie, że doszłaś do takiej sprawności jaką masz.
Cześć, bardzo dziękuję za Twój komentarz i przepraszam za brak napisów. Niestety nie jestem już aktywna na tym koncie z powodu pracy i innych zobowiązań i niestety nie mam możliwości w tym momencie dodania polskich napisów do wszystkich filmów, ponieważ zajmuje to bardzo dużo czasu (ponad 2h do każdego filmiku). Wszystkie moje filmy są mówione w języku angielskim i o ile dobrze pamiętam, wszystkie mają też angielskie napisy. Dodałam polskie napisy do kilku pierwszych filmów, żeby mogła je zrozumieć moja rodzina, ale niestety musiałam potem przestać to robić właśnie przez ilość czasu jaką to zajmowało.
Ten kanał założyłam w ramach zaliczenia na angielskim uniwersytecie i był przeznaczony dla odbiorców anglojęzycznych, stąd mówię tylko po angielsku i takie też są dostępne napisy. Mój kanał trochę przypadkiem trafił do odbiorców polskich przez jeden wywiad i artykuł, ale stało się to już kilka miesięcy po tym, jak przestałam być tu aktywna.
Nie chciałam zostawiać Twojego komentarza bez odpowiedzi, ale wybacz mi, że nie jestem w stanie obecnie dodać polskich napisów. Mam nadzieję, że poradzisz sobie w choć częściowym zrozumieniu angielskich napisów :)
Jeszcze raz dziękuję za Twój komentarz!
@@99able jasne, rozumiem, trudno się mówi :) Pozdrawiam!
Congrats, you are so cute
Hi! Mama to an AMC baby here! Were you always able to bend your elbows like that? My daughter is 5 months and hasn’t shown any active bending in her elbows. We think she may be missing her biceps or they are very weak.
Hi! I was never able to fully straighten my elbows so it was the opposite in my case. I hope it helps! :)
Love your accent! And your hands are cute! I think:-)
Thanks! 😅
99%able you welcome❣
How are you? How old are you? Do you have any pain in your wrist or fingers?
Hi,
My Arthrogryposis condition looked quite the same as you, although I am male. What do you found that help or make you feel better (Excersice, youga, etc ) ? Thanks, take care.
Hi, so sorry for a late reply! Since my first week after being born until the end of high school I had physiotherapy. At the beginning it was a few times a day, later a few times a week. That helped the most. Also, swimming really helped in terms of strength in my muscles and lifting my arms up. You can get more info when you watch my video here: ruclips.net/video/kyiQQYdVJls/видео.html&ab_channel=99%25able
I talked about all of that in detail. What I do now to feel better is mostly trying to be active at least a bit and trying to do all of the things without the help of others. Thank you for commenting! I hope it helps :)
@@99able no problem mate, good luck.
You have very dainty hands. It's cute.
Hi how are you….how old are you…
Being born with ACM is really hard for me
I'm really sorry to hear that, I do hope you'll find some tools or physio that could help
You are beautiful 😍
❤️
Siema, mam tak samo tyle że u mnie bardziej krzywy jest lewy nadgarstek a nie prawy, jak chcesz kiedyś popisać (o pierdołach, np czy mamy podobne problemy) to zapraszam na statystycznypl@gmail.com
Z chęcią bym też zaciągnął języka od Ciebie co próbowałaś z tym robić i tak dalej bo mam 25 lat i sam się zastanawiam powoli co by tu wykombinować.
Pozdrawiam
Jacek