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Looking for a doctor who can monitor a 30 year old man with ACC partial in the South Florida area

Awesome

There's a lot going on here; I wish this was a longer video. Thank you for sharing. So beautiful. ❤

My only exposure to the idea of not having a corpus callosum was from discussions in psychology classes where it had beenn cut later in life, often due to a seizure disorder. So I was expecting to see people being unable to move part of their body and stuff like that. Like maybe their legs would work, but not both arms or both sides of their face. It seems there is a big difference when you are born with it and can compensate. I can see why it might confuse others who may have heard about the corpus collosum and what it does. I do kinda wish we had more visual representations of what these issues are, because it would help me when they talk about how "not normal" they are and how they have to learn to accept it.

Due to my thin Corpus callosum. miss parts, Arnold Chiari II, SBO. Thats what defines me.

I’ve had students with this diagnosis.

“Are you sure?” 🙄 🤣🤣🤪

Lovely interviews, thanks.

Thank you for educating us

13:19 I love the way you explain that.

just to speak to the point that people don’t understand!! i have agoraphobia. i’m 78. people my age talk about forcing themselves to, for instance, go out for a walk. they do Not get that i cannot force myself. my head has to be in certain relaxed state or if i don’t go to the store, i will have nothing decent to eat!! then i take a chlonazepam and take my life in my hands and go out. (n.b. once i’m in the store, i’m pretty good! ?) anyway i finally thought of a way, just last week, to visualize it for people. you go to step out of your usually safe house and there’s a thick panel of glass that stops you. there is no getting past it!! maybe there’s a way you guys can visualize your disorder for other people. cause they just do not get it. :) 🌷🌱

Thanks everyone for sharing. My son is the only person I know with CCD.

I learned something new today. Thank you.

Two minds; two people; in the same body. Weird eh.

This is a beautifully created and edited video. Thank you so much to the participants.

One of my twin daughters has a small part of her Corpus Callosum misshapen tho the doctor told us, when she was born that it was in the normal range. She is a twin and while I would never call her normal (she is the craziest, funniest, smartest twin ever and her 3 min older twin sister runs a close second but has a normal CC based on ultrasound before birth. She has a four year bachelor’s of arts university degree that she got all on her own. She can do anything she just takes a little bit longer to process some things. She does an amazing job of managing her world. You would never ever know that she has this different ability. She also reacts poorly to loud noises and she has so much in common with you all yet she can literally do everything. She is really good at things that her twin sister, whose corpus callosum is of normal size and shape, isn’t as good at. She just takes her time to make sense of the world and we just always knew that and gave her her space to process. But we have never ever ever said that she had a disability. She just has different abilities. Disability implies that she is somehow lesser of a person and she is anything but! She is friendly, happy, very intelligent and successful and so much more! She is amazing at ASL, she can sus out a situation faster and better than I do! I love the adult person that she has become and she has never been told she was different until she was in high school and her neonatologist said she was perfectly normal and that her brain difference was like the difference in hair color. And that’s how she was raised, treated, loved and respected. And she is gorgeous! I think the moral is, “don’t ever let anyone tell you you can’t do something.”Bc you can do anything!

Ive told people about this issue for years, (Im an AutoDidactic on the Autistic Spectrum but not a CCD) since I first heard about it as a teenager. People are just people, no matter what issues they might struggle with. We all need to be raised to be kinder to each other. Thank you for sharing this with us! ❤

thanks for imforming us

I believe this shows that we all need to be aware that there is a potential for anyone to have a disorder of some sort. Speaking as someone who only recently was diagnosed with my own invisible disorder I do my best to be understanding of everyone, as I don't know what they are going through.

I’d never heard of this disorder. It’s not obvious from outward appearance. All of these people look like any common person you’d see anywhere. You’d not even notice by having a casual conversation. Suppose you live in the same building and see the person in passing. “ “Hi. Beautiful weather, isn’t it?” “Yes, it’s lovely.” “Well, enjoy your day.” “You too, love.”

I understand the difficulty with fine motor skills. Notice the uncoordinated air quotes @6:07.

I don't know how to ask this question so I am just going to ask it. Forgive me please if it hurts anyone's feelings. Here goes. Would you rather your mom terminated you during pregnancy? Or are you grateful for your life as it is?

I still call myself handicapped, not disabled. I'm kinda other abled.

"We actually ended up teaching the doctors" is a sentence my husband used yesterday. I have a weird neurological condition and can relate to these these people.

⚡️I have a 40yr old son with who nearly died at birth due to cerebral asphyxia. He has epilepsy, learning disabilities, autism, etc. But I had never heard of CCD before. I want to thank all of you for educating me! I do not say this to be condescending in any way - I am just so impressed with how eloquently you all spoke. The patient and thoughtful manner in which you answered the questions presented to you shows everyone how intelligent and knowledgeable you are! Having a “hidden handicap” or “invisible disability” can be very challenging. It takes a lot of courage and determination to face the challenge. I admire each one of you. I admire my son. Because you are all beautiful and very brave!✨🙏🏽💖😎

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Thank you for this enlightening experience! ❤

I was born with partial agenesis of the corpus callosum. I have hydrocephalus, a diagnosed Nonverbal Learning Disorder, and very highly likely ADHD/Autism. This randomly showed up as a suggestion for me. It's eerie how well TH-cam knows me

“you become proud by practicing” is a lovely line

Jade you crack me up ❤ What an amazing share of information on a disorder I was unaware of.

This video came across my home page quite randomly, I'm so glad! This was super informative, I had never heard of CCD before, but hearing from these people's lived experiences is so valuable! Thank you for doing what you are doing :)

I have it im normal but i was in learning classes all through school but life for me is pretty much no different then anyone one else im 34

Another great interview, thank you

I found out i had complete acc when i was 33 years old. My parents had no idea all these years. I struggle with recognizeing facial expressions in others. Cognitive thinking takes me longer figuring things out. I havw a high toletance for pain. And i struggle with keeping up with daily work tasks also strughle with schizoaffective disorder amd anxiety..

Great work lovely to see you

Keep up the good work

Very interesting interview, keep up the good work

My daughter has also born without carpus callosum 😢

Me too my child was born acc farouk have 9 years old but he can't talk correctly

I didn’t even know I had ACC until an MRI 3 years ago after a severe migraine. What’s interesting is I learned to juggle, unicycle, and a lot of other skills with little difficulty. Knowing now what I do about ACC explains a lot of the different things I had and still have trouble with.

My Daughter- Faith. has complete Acc. She is age 12 now. Adhd, Behavioral issues, Autism Spectrum, She can Talk. Her Think to Speak is slower sometimes, she can get Frustrated. She is a Hard worker in Helping Others. Her Strength and or Pain levels is Very Very Strong. She does struggle with her peers often. She is very Senitive to How Others Feel.... 🇺🇸 USA

I don’t understand why this is bad? I was born without the C C, and I’m wicked fuckin smaaaht.

You have given me so much hope for my child. Thank you from the bottom of my heart ♥️ for sharing your amazing story. You are a beautiful shining light in the world and please realize how beautiful you are.

So helpful!!

Thank you so much for your excellent insight into DCCs.

I also have ACC. the gentleman in the clip,and the symptoms he explained are just about 💯 percent if what I deal with as well.

Feel pity for you all darlings, I have infant with ACC😫

My sisters newborn was just born with this

Will you be having another meeting this year?

Thank you!