⚡️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!✨🙏🏽💖😎
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.
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.
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.
"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.
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 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!! 😊
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.
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.”
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! ❤
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.
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 :)
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!
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.
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.
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.
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
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.
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.
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.
So sorry to hear that. Unfortunately we hear it way too often. It's strange how people can just ignore and deny all the information they've just received and then pick up on one feature and immediately value judge and invalidate..
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.
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.
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. :) 🌷🌱
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.
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'!
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.
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.
I don't know why TH-cam 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.
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." TH-cam is even more mysterious. We invite you to watch the video and enjoy sharing a little bit of the lives of these wonderful people.
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.
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?
@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.
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.
@@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 .
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?
⚡️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!✨🙏🏽💖😎
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.
They seem more “normal” than most people I know… and I love the hair color on the lady in the yellow dress😊
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.
“you become proud by practicing” is a lovely line
Thank you for highlighting that.
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.
Wise words. Invisible disability can be a blessing and a curse.
"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.
4:08 That's not unusual because a GP can't know everything which is why we have referrals to specialists.
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🙄
@@LuciThomasHardylover-qx6ts ouch! That's tough.
@@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!! 😊
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.
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.”
Exactly!
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! ❤
Kindness is vital and being kind is something that everyone can do.
This is a beautifully created and edited video. Thank you so much to the participants.
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.
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 :)
Thanks so much for watching this random video. We are very glad you did. :)
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!
you are so wonderful to bring her up the way you did. so terrific she’s doing so well. :) 🌷🌱
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.
Jade you crack me up ❤
What an amazing share of information on a disorder I was unaware of.
She does indeed! Thanks for watching. :)
I understand the difficulty with fine motor skills. Notice the uncoordinated air quotes @6:07.
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.
Thanks everyone for sharing. My son is the only person I know with CCD.
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.
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
Glad you could check out a few of your CCD peers. :)
I don't know why TH-cam brought me here, but I have Chiari type II. I'll send this to a friend who doesn't have a CC!
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.
Thank you for this enlightening experience! ❤
Thank you for watching. :)
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.
I agree. Such a conundrum! Thanks for your love!
thanks for imforming us
Thanks for watching. :)
I learned something new today. Thank you.
This is new to me. Thank - you so much for sharing and educating people.
Me too 👊
Thank you for watching. We love it when someone learns something new.
Thanks for watching. :)
Thanks for watching. :)
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.
So sorry to hear that. Unfortunately we hear it way too often. It's strange how people can just ignore and deny all the information they've just received and then pick up on one feature and immediately value judge and invalidate..
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.
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.
Lovely interviews, thanks.
Glad you like them!
Thank you for educating us
Thank you for watching. We hope it was an entertaining education.
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. :) 🌷🌱
A good B-Complex and an additional B1 helps immensely with anxiety disorders.
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.
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'!
13:19 I love the way you explain that.
Thank you. We hope it was an enjoyable way to get a better understanding of the people and the condition.
I still call myself handicapped, not disabled. I'm kinda other abled.
Yes it's hard to keep up with the language and is a personal choice.
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.
Same here, in a psychology lecture
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.
Beautiful❤
Thank you! 😊
I don't know why TH-cam 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.
the Universe works in mysterious ways
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." TH-cam is even more mysterious. We invite you to watch the video and enjoy sharing a little bit of the lives of these wonderful people.
I’ve had students with this diagnosis.
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.
“Are you sure?” 🙄 🤣🤣🤪
Oh yes... All the time!
Due to my thin Corpus callosum. missing parts, Arnold Chiari II, SBO. That's what defines me.
Thank you for sharing Mitch. I hope you enjoyed the video.
@@ausdoccvideos5692 You're welcome. :)
Awesome
Thank you. :)
Two minds; two people; in the same body. Weird eh.
You might enjoy this. th-cam.com/video/DLpCfHH1OVU/w-d-xo.html
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?
That IS quite a question! Judge for yourself by their animated conversation what would be their answers.
@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.
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.
@@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 .
These people all make the world a far better place. Their own lives would be better if society was equitable, kinder and more understanding.
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?