Margot Schmiedge talks about her daughter Tara, who has Kabuki Syndrome, and the online support network she established in the 1990s to help other families with the syndrome.
I am 20 and was born with kaboke syndrome With that I also was born with a heart condition called aortic stenosis and needed heart surgery at 2 weeks old. but I don’t let it stop me . Even though I do have this condition I still graduated high school and went to a regular high school for me I also have bad Anxiety when I do music really helps me calm down especially rock and hard rock music also playing drums for me which I’ve been playing for 17 years also helps
I just today came across this video. We're just finding out that our 7 year old son has this syndrome. For years we felt he had a genetic condition, but didn't know what it was. He fits in perfectly with the descriptions. I would love to hear more from you!
I believe that I have Kabuki syndrome but my insurance won't pay for genetic testing. I've had severe, debilitating panic attacks since my childhood. I also have mitral valve prolapse, scoliosis, severe acid reflux and digestive problems. I know that finding out if I have Kabuki syndrome won't change how my panic attacks are treated, but at least I wouldn't feel so alone. I have attempted suicide three times in the past, due to the severity of the panic attacks and anxiety. For a long time, I became very agoraphobic and wouldn't even leave home. As I get older, things aren't getting any better. I didn't have children because I was afraid they would have to live with what I have to, every single day. Can anyone give me some information to help adults who wish to be tested for kabuki?
Good luck to all parents of Children with Kabuki Syndrome. My Girlfriend is one of them, dropped by her husband when the Kabuki Child was born. Today we live together since some years, and she told me her story. I am a musican and it reached me very emotionally so i had to compose a Song about it. If you like, find it here: czcams.com/video/n8xV6wut-DY/video.html
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I am 20 and was born with kaboke syndrome With that I also was born with a heart condition called aortic stenosis and needed heart surgery at 2 weeks old. but I don’t let it stop me . Even though I do have this condition I still graduated high school and went to a regular high school for me I also have bad Anxiety when I do music really helps me calm down especially rock and hard rock music also playing drums for me which I’ve been playing for 17 years also helps
My 3rd son just got diagnosed with Kabuki Syndrome and he was born with a heart Defect called VSD. He's 4 months old.
I just today came across this video. We're just finding out that our 7 year old son has this syndrome. For years we felt he had a genetic condition, but didn't know what it was. He fits in perfectly with the descriptions. I would love to hear more from you!
My son is 18 months and just officially diagnosed down the rabbit hole I go
I believe that I have Kabuki syndrome but my insurance won't pay for genetic testing. I've had severe, debilitating panic attacks since my childhood. I also have mitral valve prolapse, scoliosis, severe acid reflux and digestive problems. I know that finding out if I have Kabuki syndrome won't change how my panic attacks are treated, but at least I wouldn't feel so alone. I have attempted suicide three times in the past, due to the severity of the panic attacks and anxiety. For a long time, I became very agoraphobic and wouldn't even leave home. As I get older, things aren't getting any better. I didn't have children because I was afraid they would have to live with what I have to, every single day. Can anyone give me some information to help adults who wish to be tested for kabuki?
cee hernandez - I hope you found relief ❤️
Good luck to all parents of Children with Kabuki Syndrome. My Girlfriend is one of them, dropped by her husband when the Kabuki Child was born. Today we live together since some years, and she told me her story. I am a musican and it reached me very emotionally so i had to compose a Song about it. If you like, find it here: czcams.com/video/n8xV6wut-DY/video.html