AusDoCC Videos
AusDoCC Videos
  • Видео 24
  • Просмотров 36 322
2024 AusDoCC Slide Show. Corpus Callosum Awareness Day. July 2, - the middle day of the year
July 2, 2024: The AusDoCC community celebrates International Corpus Callosum Awareness Day, 2024 by asking people to show us what they are 'best at.'. We celebrate each year on July 2, the middle day of the year, to represent the corpus callosum in the middle of the brain. Our acknowledgement of this special day connects our community.
AusDoCC first began celebrating this symbolic day in 2015 to acknowledge all the people in our amazing community, across the nation.
In 2016 it became an international event.
Просмотров: 60

Видео

ASKING FOR A FRIEND - 14 adults with a Corpus Callosum Disorder (CCD) answer the tricky questions.
Просмотров 9 тыс.3 месяца назад
Take a glimpse at life with a corpus callosum disorder (CCD) as 14 adults generously and candidly share insights into their lives while answering some tricky questions. What is a corpus callosum disorder? What can you do that people think you can't? What's the dumbest thing that anyone's ever said to you? What do you think about sex? What's the best thing about having a CCD? and more... Chuckle...
KIDS, WHAT ARE YOU BEST AT? Australian Disorders of the Corpus Callosum (AusDoCC)
Просмотров 2013 месяца назад
Kids with a corpus callosum disorder (CCD) tell us about their wishes, the corpus callosum and what they are best at. A Corpus callosum disorder (CCD) is a rare condition affecting approximately 1:4000 Australians. People with a CCD are born missing part or all of their corpus callosum, the main body of nerves that connects the 2 hemisphere of the brain, allowing cognitive, sensory and motor co...
THE HIGHLIGHTS: CONNECTIONS 2023 - for all things corpus callosum
Просмотров 1174 месяца назад
A Corpus callosum disorder (CCD) is a rare condition affecting approximately 1:4000 Australians. People with a CCD are born missing part or all of their corpus callosum, the main body of nerves that connects the 2 hemisphere of the brain, allowing cognitive, sensory and motor communication between the hemispheres. The impacts are many and varied and range from mild to severe. CONNECTIONS 2023 g...
All Things Corpus Callosum - Dr Lynn Paul - psychological and social impacts
Просмотров 3665 месяцев назад
Why do things take longer with a CCD and what can we do about it? Why does having a CCD commonly affect social skills? Where does emotional regulation fit in? What does it mean when someone is told their child will 'be ok?' Do people with a CCD have super powers? Hear the latest information about social, psychological and cognitive impacts of corpus callosum disorders from globally renowned res...
CORPUS CALLOSUM AWARENESS DAY JULY 2, 2023. AusDoCC slide show
Просмотров 265 месяцев назад
July 2, 2023: A collection of people in the AusDoCC community celebrating International Corpus Callosum Awareness Day, 2023. We celebrate each year on July 2, the middle day of the year, to represent the corpus callosum in the middle of the brain. Our acknowledgement of this special day connects our community. AusDoCC began celebrating this day in 2015 to acknowledge all the people in our amazi...
All Things Corpus Callosum - Dr Natasha Alexander - Sexuality and relationships
Просмотров 1746 месяцев назад
AusDoCC Speaks Series - Professionals' Interview #3 How do corpus callosum disorders affect relationships? Is it easy for people with a CCD to have friends and partners? How can we teach people about safety and boundaries in relationships? What are 'red flags'? What does a healthy relationship look and feel like? How do we address consent from an early age? Where does pleasure fit in? Hear the ...
All Things Corpus Callosum - Dr Rhonda Booth - The Psychology.
Просмотров 2167 месяцев назад
AusDoCC Speaks - Professionals Interview #2 How do corpus callosum disorders affect us psychologically? Is there a link with autism? What social difficulties do we see in children? Do we really need to 'wait and see?' What early supports can we offer? How can we reduce the stress of parenting a child with a rare condition? Hear the latest information from leading psychology researcher, Dr Rhond...
All Things Corpus Callosum - Prof. Linda Richards - The Science. #1
Просмотров 4228 месяцев назад
AusDoCC Speaks Series - Professionals' Interview #1 How does the corpus callosum form and what does it actually do? Hear the latest scientific corpus callosum information from leading researcher, Professor Linda Richards, in an interview with Brigid O'Connell. Produced by Australian Disorders of the Corpus Callosum (AusDoCC) with Mighty Films, at Connections 2023, Melbourne Australia. Funded by...
AusDoCC Media - Corpus Callosum Awareness Day 2020 - Mitchell
Просмотров 347Год назад
AusDoCC Media - Corpus Callosum Awareness Day 2020 - Mitchell
AusDoCC Media - Corpus Callosum Awareness Day 2020 - Georgie
Просмотров 202Год назад
AusDoCC Media - Corpus Callosum Awareness Day 2020 - Georgie
AusDoCC Media - Corpus Callosum Awareness Day 2020 - Karina
Просмотров 457Год назад
AusDoCC Media - Corpus Callosum Awareness Day 2020 - Karina
AusDoCC presents:Tales of Edna - The Arrival
Просмотров 3713 года назад
A mysterious visitor is making plans to come and meet her new friends at AusDoCC. What is AusDoCC? What is a fat tailed dunnart? What is a corpus callosum? Who is Edna? All will be revealed in this first tale, with many more adventures to come.
INTRODUCING - Clare Keogh - Adult with Agenesis of the Corpus Callosum
Просмотров 1,7 тыс.4 года назад
The 2020 Info Day Collection. Clare Keogh is an Australian adult with congenital agenesis of the corpus callosum. Clare is a practising paediatric Occupational Therapist who works in Melbourne. Clare likes music and animals, particularly dogs! Join Clare as she gives some insights into her life with ACC. From the 2020 online Information Day series.
#8 That's How I Am - about the Corpus Callosum and ACC
Просмотров 9 тыс.4 года назад
What's it like to live with ACC (agenesis of the corpus callosum)? Learn about agenesis of the corpus callosum (ACC) from those who have it. Meet Andie, Anna, Michael, Kody and Michael who will tell you what it's like to rock at life without a corpus callosum. As Andie wisely says... "Thats how I am!" Everyone is different and thats why its described constantly as a heterogeneous condition. Hea...
#7 The Psychosocial aspects of DCC (ACC) with Dr Lynn Paul
Просмотров 1,9 тыс.4 года назад
#7 The Psychosocial aspects of DCC (ACC) with Dr Lynn Paul
#6 The Corpus Callosum with Professor Linda Richards
Просмотров 4494 года назад
#6 The Corpus Callosum with Professor Linda Richards
#4 AusDoCC - Disorders of the Corpus Callosum (DCC) & Autism
Просмотров 4664 года назад
#4 AusDoCC - Disorders of the Corpus Callosum (DCC) & Autism
#3 Four Australian Clinicians Answer Five DCC Questions
Просмотров 2094 года назад
#3 Four Australian Clinicians Answer Five DCC Questions
#1 Globally Renowned Corpus Callosum Researchers speak at AusDoCC conference - Connections 2017
Просмотров 4354 года назад
#1 Globally Renowned Corpus Callosum Researchers speak at AusDoCC conference - Connections 2017
#5 The Corpus Callosum. Parents and Adults explain DCC
Просмотров 2,5 тыс.4 года назад
#5 The Corpus Callosum. Parents and Adults explain DCC
#2 How can we raise the profile Corpus Callosum Disorders?
Просмотров 1754 года назад
#2 How can we raise the profile Corpus Callosum Disorders?
Maladaptive Daydreaming and ACC - Michael Shanahan Speaks.
Просмотров 5814 года назад
Maladaptive Daydreaming and ACC - Michael Shanahan Speaks.
Meet 3 adults with ACC (agenesis of the corpus callosum). Crossing the Bridge, Brisbane - 2018
Просмотров 7 тыс.4 года назад
Meet 3 adults with ACC (agenesis of the corpus callosum). Crossing the Bridge, Brisbane - 2018

Комментарии

  • @annepoitrineau5650
    @annepoitrineau5650 День назад

    Being Aspi, I am so aware that there are many ways you can have a functional brain... And then so much for "You can't be disabled, I can't see anything". Lots of love to all of you on the video.

  • @thecrapartistx
    @thecrapartistx 26 дней назад

    I spend a lot of time around people who believe themselves intellectuals and folks will have long conversations with me about the nature of existence and reality and if I let it slip that I have a brain defect they start treating me like a child or they stop talking all together.

  • @loriegosnell9355
    @loriegosnell9355 2 месяца назад

    They seem more “normal” than most people I know… and I love the hair color on the lady in the yellow dress😊

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      This can be a positive and a negative. It helps when wishing to 'blend in' but it's often hard to get the recognition for supports. They are an amazing and dynamic community.

  • @Proudgrammie
    @Proudgrammie 2 месяца назад

    Beautiful❤

  • @jebbiekanfer8843
    @jebbiekanfer8843 2 месяца назад

    I kind of remember this from a neuroanatomy class, but we didn’t spend much time on it. It just popped up on my feed. It seems like left and right side of brain might be competing.

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Thank you for your comment. Unfortunately, there is not enough time spent on it and people don't have a good grasp of the heterogeneity or the impacts. We are slowly changing that.

  • @daniellebenfield95
    @daniellebenfield95 2 месяца назад

    I dont have this disorder, but can sympathize, first off, with some of thr general symptoms (i do have another condition that can cause brain damage jn itself, in addition to the surgery needed to treat the disorder. I really felt the not being able to ride a bike and having trouble with certain aspects of driving HARD lil!) . Having the condition i have, in addition to two autinmune disorders, having to question/educate doctors, in addition to at times being kind of a guinea pig is kinda a thing. For general purposes, i obviously have a family doctor, i need to be followed by a neurosurgeon for life, and while i cant afford it (in addition to it seeming useless as i honestly am not interested in the likely treatment they would prescribe at the moment makes seeing them kind of a waste, i have seen/should be seeing a rheumatologist for the autoimmune stuff. Point of bringing this up is, over the years of dealing with the autoimmune stuff, i have had a family doctor and numerous opinions from three rheumatologists and five neurosurgeons at three different hospitals trying to help me figure some stuff out. All of my doctors (mainly relevant to the specialists as they would be responsible for for specific treatments, but this does to an extent inclue my family doctor), have treated patients with either the autoimmune disorders, or hydrocephalus, not both. So it comes down to nobody can seem to pin down which disease is causing what symptoms, or if i may be having an unusual issue due to the combination of dieseases. Specific issue that comes to mind and makes me wonder is, there is some evidence that women who get breast implants are at increased risk of one of the autoimmune disorders i have, but for a little bit of context, it seems to be a bit unclear to me exactly WHY. That said, i dont have breast implants, but i do have a couple shunts (for the hydrocephalus), that are made out of silicone. So, like, is there a correlation there, to an extent keeping in mind that i do also have a family history of the other autoimmune disease, but not the one that seems to have a correlation with breast implants. All that said, i feel like theres a lot of finding potentially helpful info online, or saying "i know of skmeone who has had a similiar issue to me and this is whats being done." To usually get blown off and not even getting an explanation as to why they are jnwilling to consider something. Like, it was sugfessted by one of my doctors to possibky look into if i might have developed an allergy to the silicone in my shunt. Two different neurosurgeons have sworn up and down that they havent seen that happen and that it literrmally doesnt/cant happen. Yet, an allergy test proved them wrong. I mean, in their defense, i can buy that theve never seen it happen, because it is extremely rare. But can we potentially consider (or can you give me a legitimate reason why this wouldnt be the caee), that given i have kind of a whacky immune system, that it could have potentially set off something weird?

  • @snakebitepellehue
    @snakebitepellehue 2 месяца назад

    I don't know why RUclips brought me here, but I have Chiari type II. I'll send this to a friend who doesn't have a CC!

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Thank you for sharing your own experience. You have certainly gone through some difficult times. I hope you can find some answers. Sometimes hydrocephalus can be present with corpus callosum dysgenesis (CCD) and I expect you have had an MRI that has ruled out CCD. It seems the most important thing with all these rare conditions is that you find the right people who will take an interest in both you and the diagnosis and are willing to spend the time and effort to get to the bottom of a mystery. Wishing you all the best.

  • @malcolmdale9607
    @malcolmdale9607 2 месяца назад

    I don't know why RUclips recommended this video to me, I am 85 years old and I never heard of corpus callosum and, as far as I know, I never met anybody who had this problem.

    • @kathyinwonderlandl.a.8934
      @kathyinwonderlandl.a.8934 2 месяца назад

      the Universe works in mysterious ways

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      From our perspective, one of the issues is that people have never heard of a corpus callosum and we are hoping that people become more familiar with it. Most people have never heard of it because they have one! For those who don't, it's important for us to spread awareness. Even though a significant brain part is absent, people with this condition are often ignored and undersupported. As another responder said, "the universe works in mysterious ways." RUclips is even more mysterious. We invite you to watch the video and enjoy sharing a little bit of the lives of these wonderful people.

  • @seaglassjpl1467
    @seaglassjpl1467 2 месяца назад

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

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      We are in Australia but the NODCC in the US may be able to help you.

  • @trueone2925
    @trueone2925 2 месяца назад

    Awesome

  • @mainlittlerock5422
    @mainlittlerock5422 2 месяца назад

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

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Thank you. Check out our other videos. There are some interviews with key researchers who will give more insights into the condition and you can meet some of the other people with lived experience. You may also be interested in watching this. ruclips.net/video/DLpCfHH1OVU/видео.html

  • @ZipplyZane
    @ZipplyZane 2 месяца назад

    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.

    • @deniseoxland151
      @deniseoxland151 2 месяца назад

      Same here, in a psychology lecture

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Thank you for your response. We hear that a lot because it is extremely heterogeneous in cause and presentation. Impacts can be cognitive, psychological and physical and range from mild to severe. Research around adults is growing and filling some of the gaps. Some of the researchers are actually looking at similarities and difference between congenital CCD and surgical disconnection.

  • @mitch19636
    @mitch19636 2 месяца назад

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

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Thank you for sharing Mitch. I hope you enjoyed the video.

  • @hellynnwheels6819
    @hellynnwheels6819 2 месяца назад

    I’ve had students with this diagnosis.

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      It can be hard for educators to wrap their head around this condition because it presents differently for every person. The best way to approach it is to learn about CCDs and learn about the individual and how it affects them. There are many different impacts. It is a team effort.

  • @violiendamast
    @violiendamast 3 месяца назад

    “Are you sure?” 🙄 🤣🤣🤪

  • @freecountry3544
    @freecountry3544 3 месяца назад

    Lovely interviews, thanks.

  • @biddiemutter3481
    @biddiemutter3481 3 месяца назад

    Thank you for educating us

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Thank you for watching. We hope it was an entertaining education.

  • @biddiemutter3481
    @biddiemutter3481 3 месяца назад

    13:19 I love the way you explain that.

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Thank you. We hope it was an enjoyable way to get a better understanding of the people and the condition.

  • @feralbluee
    @feralbluee 3 месяца назад

    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. :) 🌷🌱

    • @KassiusFineArt
      @KassiusFineArt 2 месяца назад

      A good B-Complex and an additional B1 helps immensely with anxiety disorders.

    • @kerriecu2
      @kerriecu2 2 месяца назад

      My ex husband became a severe agoraphobic about 6 months after we married. He didn’t go out the front door for the first two years. After that, you know, he didn’t die, he still says he is agoraphobic, but separating our marriage led to hi great improvement because he just had to fend for himself. Freed me from 35 years of a difficult marriage, too.

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Thank you for sharing. Social anxiety can be a common impact in this community. It is often difficult for other people to understand that it's not 'won't', but 'can't'!

  • @donnabarns5327
    @donnabarns5327 3 месяца назад

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

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Thanks for commenting Donna. There are Facebook groups around the world where adults with CCD and parents can connect with one another. We are in Australia but there are groups in many other countries particularly the US and the UK. It's a great place for support and sharing.

  • @Wranglerlaura
    @Wranglerlaura 3 месяца назад

    I learned something new today. Thank you.

  • @rezzer7918
    @rezzer7918 3 месяца назад

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

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      You might enjoy this. ruclips.net/video/DLpCfHH1OVU/видео.html

  • @judithenglish
    @judithenglish 3 месяца назад

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

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Thank you Judi. We're glad you enjoyed it. It was the first time that many of them have taken part in something like this and they all really enjoyed it. We hope to make more in the future.

  • @jamiedbg51
    @jamiedbg51 3 месяца назад

    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!

    • @feralbluee
      @feralbluee 3 месяца назад

      you are so wonderful to bring her up the way you did. so terrific she’s doing so well. :) 🌷🌱

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      So glad to hear of your daughter's successes. You hit the nail on the head with things taking longer. For some of the community extra time is all they need. Others may have more severe impacts but things generally take longer for all of them. It's really important that people recognise that progress is still made. Quite a lot of our community achieve well academically and have more of the sensory and physical impacts. Some have intellectual disability. It's such a heterogeneous condition.

  • @tamnosivad3623
    @tamnosivad3623 3 месяца назад

    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! ❤

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Kindness is vital and being kind is something that everyone can do.

  • @zezezep
    @zezezep 3 месяца назад

    thanks for imforming us

  • @tonilafountain636
    @tonilafountain636 3 месяца назад

    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.

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Wise words. Invisible disability can be a blessing and a curse.

  • @mariekatherine5238
    @mariekatherine5238 3 месяца назад

    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.”

  • @Lpement
    @Lpement 3 месяца назад

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

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      I hadn't noticed that. Just for interest, some people with this condition have mirror movements. This has genetic origins and the impact is that when one hand is doing something, the other mimics it.

  • @Beverly-e4z
    @Beverly-e4z 3 месяца назад

    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?

    • @mariekatherine5238
      @mariekatherine5238 3 месяца назад

      That IS quite a question! Judge for yourself by their animated conversation what would be their answers.

    • @ColleenLytle-sq8tx
      @ColleenLytle-sq8tx 3 месяца назад

      @user-wd5qw2sr4d I'm glad you asked that question, you did it well and sensitively. Most folks don't mind answering questions about their quality of life, and you were kind in asking. I know a lot of folks want to ask questions, but we're told not to look or stare when we're kids, and there IS no one to ask. So you're in the right spot - I just wanted to support you. My best.

    • @tamnosivad3623
      @tamnosivad3623 3 месяца назад

      In spite of my disorder , I was not a "Dangerous" pregnancy endangering my mothers life. Nor was I ectopic. If I would have caused harm or been FATAL to my mother, I would rather not be here. I have empathy and would rather not harm others because I am somehow more IMPORTANT than anyone else. CCD does not mean a Mothers life was in danger.

    • @Beverly-e4z
      @Beverly-e4z 3 месяца назад

      @@tamnosivad3623 Thank you for responding. Oh if we could sit and talk I would be a rapt listener.....and would have so many questions! You see, my daughter is expecting. The baby has partial ACC. I want to know if he lives, will he have some quality of life? Thank you again. May God bless you .

    • @ausdoccvideos5692
      @ausdoccvideos5692 3 месяца назад

      These people all make the world a far better place. Their own lives would be better if society was equitable, kinder and more understanding.

  • @daisypekin6787
    @daisypekin6787 3 месяца назад

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

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Yes it's hard to keep up with the language and is a personal choice.

  • @bonniewashington541
    @bonniewashington541 3 месяца назад

    "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.

    • @biddiemutter3481
      @biddiemutter3481 3 месяца назад

      4:08 That's not unusual because a GP can't know everything which is why we have referrals to specialists.

    • @LuciThomasHardylover-qx6ts
      @LuciThomasHardylover-qx6ts 2 месяца назад

      It's the doctors who insist that they DO know everything that are the problem,gps or consultants! When you have rare conditions you know that you can't expect doctors to know everything about all of them. But to have a doctor look you in the eye and tell you that you can't have whatever it is after years of getting diagnosed,or (more commonly) that they simply 'dont believe in*****( fill in the blank) is so difficult!) I have something that regularly requires an ambulance,and lands me in a&e, 8 years later my small town local hospital still don't treat me because they don't know and won't find out what to do with me🙄

    • @biddiemutter3481
      @biddiemutter3481 2 месяца назад

      @@LuciThomasHardylover-qx6ts ouch! That's tough.

    • @LuciThomasHardylover-qx6ts
      @LuciThomasHardylover-qx6ts 2 месяца назад

      @@biddiemutter3481 that's sweet of you to say! It's tougher for my daughter who has to watch it all, and with the ever present worry that she'll end up like me! Just so exhausting when every single person from the paramedics who lift me off the pavement, the staff who lift me onto a bed, the nurse who comes to do your vitals, the nurse who comes to remove the monitors etc every single one insists that they must hear from you yourself what happened and why you're there. Even when I'm choking so bad I can't swallow my own saliva for FIFTEEN hours!!! Won't speak to the previous person, won't listen to my very competent daughter, won't read the notes and almost all of them go away and never get seen again 🤦🤬 or even worse then go and Google it and get the wrong type and start rushing me around thinking that I have a vascular version 🤦👊😂 so I really feel for people with rare conditions, especially when there isn't an easy way to explain it because it can affect everyone so differently. And laughter at the absurdity is the only coping skill we've found of any use! Lots of lovely laughter from everyone!! 😊

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      It's a common complaint. Sometimes the problem isn't that doctors don't know about the condition but that some are unwilling to learn about it. Every person with a CCD is different and between the people with CCD, those who are close to them and the available research, it is possible to give effective coordinated support. Some professionals are just dismissive and not willing to learn or even believe the person the CCD. That can be very disempowering and invalidating.

  • @winterlite3243
    @winterlite3243 3 месяца назад

    ⚡️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!✨🙏🏽💖😎

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Thanks for your comment. This is our first attempt and we hope to make more videos in the future and include some of our community who may have more obvious challenges. Circumstances of making this video meant that participants had to gather independently. Being a rare condition, our members are scattered across the country. Has your son had an MRI? All the things you mentioned can be associated conditions of a CCD. Not always, but sometimes.

  • @ausdoccvideos5692
    @ausdoccvideos5692 3 месяца назад

    Please add a like and subscribe to our channel for all things corpus callosum

  • @NoTrashInHeaven
    @NoTrashInHeaven 3 месяца назад

    Thank you for this enlightening experience! ❤

  • @N4BWR
    @N4BWR 3 месяца назад

    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 RUclips knows me

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Glad you could check out a few of your CCD peers. :)

  • @leafalie7154
    @leafalie7154 4 месяца назад

    “you become proud by practicing” is a lovely line

  • @blahmehpfft
    @blahmehpfft 4 месяца назад

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

  • @stephmichaud9162
    @stephmichaud9162 4 месяца назад

    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 :)

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Thanks so much for watching this random video. We are very glad you did. :)

  • @tylersturgeon9763
    @tylersturgeon9763 4 месяца назад

    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

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Glad to hear your kicking goals in life. Thanks for watching. :) You might enjoy tis one too ruclips.net/video/ZTfa-aKdfU4/видео.html

  • @Joaquin2028
    @Joaquin2028 6 месяцев назад

    Another great interview, thank you

  • @mollyshepard9479
    @mollyshepard9479 7 месяцев назад

    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..

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      Thanks for sharing your lived experience. It must have been very difficult for you not having a reason for all those things which are all definitely connected to a CCD. I hope life is a little easier now that you know why you have these impacts. You might enjoy this one too ruclips.net/video/ZTfa-aKdfU4/видео.html

  • @wahineblond
    @wahineblond 7 месяцев назад

    Great work lovely to see you

  • @Joaquin2028
    @Joaquin2028 7 месяцев назад

    Keep up the good work

  • @Joaquin2028
    @Joaquin2028 8 месяцев назад

    Very interesting interview, keep up the good work

  • @himanshupatrawal7798
    @himanshupatrawal7798 Год назад

    My daughter has also born without carpus callosum 😢

  • @zakriafarouk8524
    @zakriafarouk8524 Год назад

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

  • @DucttapesUnicycle
    @DucttapesUnicycle Год назад

    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.

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      That's fabulous. We do have some members who do amazing things requiring Crossing over skills such as playing drums. You might enjoy this one too. ruclips.net/video/ZTfa-aKdfU4/видео.html

  • @danielleohare3364
    @danielleohare3364 Год назад

    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

  • @Billsbillsbillsbills
    @Billsbillsbillsbills 2 года назад

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

    • @ashleyfredrickson6774
      @ashleyfredrickson6774 2 года назад

      I'm wondering the same thing. I'm trying 2 do research 2 learn and educate myself about "Agnes of corpus callosum of a fetus" because im & 21 weeks pregnant & was just told that they couldn't see my son's corpus callosum so I'm waiting 3-4 weeks 2 do an MRI 2 find out if my baby has ACC I'm really Scared but no matter what I'm going to give my baby all the resources I can find or access! It's so nice 2 hear that people have this and some face many problems while others strive?!

    • @jevdawg
      @jevdawg 2 года назад

      @@ashleyfredrickson6774 don't worry my daughter was diagnosed with it when she was 1, she's 6 now, she is coming along nicely, it was a rough road but u will make it. Your kid will be fine

    • @DEATHCHICKEN1337
      @DEATHCHICKEN1337 3 месяца назад

      @@ashleyfredrickson6774Hi, how is your baby two years later?

    • @ausdoccvideos5692
      @ausdoccvideos5692 Месяц назад

      These interviews might help ruclips.net/video/h6LsMH_768Y/видео.html ruclips.net/video/WtHCaeAB0Rc/видео.html