Thank you very much. I have never met anyone with 22q, and I have 22q. I am now 29. I am a musician and a chef. I had to work twice as hard to get to where I am today. I had open heart surgery when I was about 8yo and have had over 20 other surgeries. Many on my ears due to hearing problems. I also recently discovered seizures are an aspect to 22q but only less than 6% of 22q people can get seizures. I started having the seizures last year. The father in the video said it very well that there are challenges and as we get older but it also gets easier. I have made it so certain things work for me best. What's hardest about that especially growing up is not everyone understands what I have and they didn't really know what 22q is. Having 22q for me is about having challenges in front of you, and trying your best to overcome them. I hope to someday meet others in person who have 22q. Much love to others who have it and much love to the families who have the patience to help us through it.
Hi Peter, I run @22qAwarenessDays on twitter and have a page on FB. If I you'd like to meet some young adults like yourself pls pm me and I will try and direct you to both youth groups and try and help you get in touch with someone locally who also has 22q. I live in the UK and am mum to a 13year old diagnosed with 22q at 13 days old, a week after her open heart surgery. She's doing great too.
Peter Mason I have it but not as bad as this. I only have a few symptoms from this and I’m actually smart. Idk if the symptoms various or how is it diff from person from person
My little daughter has 22q. She has just started mainstream school but one does wonder if this is the right choice. Did you attend mainstream or a special needs school?
Aw, touching. I had a girlfriend that had this and schizo effective. She had it rough. Both of her parents passed of cancer. She now lives in a group home. She got severely bullied. I didn't judge her looks at all. She is pretty inside and out. I broke up with her because of her strict care taker aunt. She wanted to be with me so bad and I did to. She was long distance. She became unstable but I kept her out of the hospital for 8 months. So I respectfully had to break up which broke me inside. Also my heart. I truely loved her. Maybe someday we will reunite in this life.
My daughter has deletion 22q11 . She was diagnosed at age 3. She had two open-heart surgeries to repair tetralogy of fallot. She is now 27 years old. The daily emotional and social challenges are great. As many of those with this syndrome understand. May God bless you all and may you find strength in His Divine Providence. As Jesus Christ, our Lord and Savior tells us , With God all things are possible!
Hi @Annie my Daughter has 22 q can you help me please. Can you share some inspiration or upbringing tips? I am currently depressed and heartbroken for my daughter.
Our daughter, now 18 has had many of the same issues as others with 22Q, VCFS, DiGeorge, whichever you prefer. It’s been horrible at times, yet rewarding to her and the rest of our family as we learned to understand just what the differences between her abilities and disabilities were. We, friends, family and the best specialists, namely Dr. Joseph Cubells (Atlanta) have guided and supported all of our efforts to help her just be her true self. She’s awesome!
My bitty baby was diagnosed with deletion of chromosome 22q11 syndrome. I love every bit of her and wouldn't change her for the world!! I have a bunch of sweet videos posted of her on my channel!
My youngest son and I would advised that my son, 38, was born with 22Q but as his parent I was NEVER told, I was only told yesterday. He has missed out on years of support, scrabbling to find him that support now and support for myself and his sibling.
This was an inspiring video. To be able to see challenges of other parents of a child with a chromosome abnormality. And to hear the help they got there kids was breathtaking. Thank you
I have identical twins who are 5 months old now. They both have 22q and severe heart defects. One of them have had surgery and the second still needs to do it. I am glad I found this. There is so much my husband and I don’t know.
My son was born 3 months ago also diagnosed with 22q, he currently has an NJ tube and in the hospital still. I've never heard if this diagnosis before. Thank you for sharing this video.
Hi I'ma adult I suffer with 22q eleven deletion wotch out , for cleft palate eating problems x I get food stuck in my throat and allergies to food as I got older ,hope I helped x
I have vcfs in 38 years old. My mum is 62 and also has vcfs. I had speach therapy as a child. My mum had faryngo plastic operation. I research this opeation too but doctor didnt wanted to operate me. My voice was to good. . I have a normal life i went to regular schools. Finished higher prof education in 2002. I work full time and have a car (automatic like in america).
I have this as well but i'm 18 living a full and fullflling life working and graduated from highschool and all that fun normal stuff except for me i have the part where i have a heart condition not autisim
We are trying to start our Channel that's about our lives around Q22. 11 deletion syndrome. If you would like to follow I have our kiddos journey on our site! We are also getting ready to have baby #2 and waiting to find out with the 20 week ultrasound what we are going to expect as I am a gene carrier. It would be good to connect with any other parents/ family members dealing with this !! Give us a shout out! :) We love our Q22 kiddos so much.
The Ricker Fam *following* My 8 yr old son has Smith Magenis Syndrome- deleted chromosome 17. I had the pleasure of having Barbara Haas-Givler & Dev. Ped. Dr. Jane Charles give my sons school a consult. I'm a researching mother, and they told me about a few similar syndromes- which landed me here😊
Meronda Roumillat understand! I'll be posting some more videos on it it's just been busy with expecting number two you can watch my video on our fetal heart ultrasound for baby #2 at the specialist:) so far no heart conditions!
I'm going to be an exchange student and my host family told me that my host sister has 22q. Is there anything I need to know in order to get along with her?
My daughter is 45 years old; she was diagnosed with 22q when she was 25. Her worst problems are the psychiatric ones. Psychosis that are very difficult to treat with this syndrome.
i was born with 22 q sometimes when I ask my mom and dad about what I have but I feel like my mom and dad don't wanna talk about what I have I feel like they get embarrassed about what I have but I stay strong for my self and stay positive someday it is super hard for me at frist to acppetd what I have but I am trying to learn everything that I have
I have a friend that has 22q as well. He does have some health issues as well that are associated with this condition. He has no T cells, and can’t sweat when it’s hot outside. He also has low calcium, and goes to see a doctor for that and takes medication too. His body is not always warm, so he gets cold as well. My friend also has a unique face that is associated with 22q. He goes to a doctor once a year that specializes in this condition
It got diagnosed when i was 13 years old but the files are missing. Now i got a very weak imune system and im always sick and cant work, the doctors searched for this file. Im turning 22 next month. But im just frustrated that they needed almost 10 years to find this file and this proof i really have a weak imune system. They always thaught i was liying or i was too lazy for school. (Sorry for bad english)
I am seeking help for my 3 months old baby just pronounced of it by the medical team. Please reach out to me, facilitating early intervention... We need it's appropriate health care/ management providers.
My son and I have duplication. We both have learning disabilities and he has a host of other behavioral issues. If anyone else has duplication, it would be nice to talk.
I have 22q!!!!!!!!!!!!!!! My thyroid is missing so I have to take a pill every morning and wait 30 minutes before I could eat :/ (I’m 13, turning 14 in May)
Javier Rojas a lot of things u always worry about to have children u can never date u speak different. And I get bullied a lot. because ur nasally. yeah I got it I experience it. But it more mainly had to do with puberty for me my real voice is coming in and I might start dating I just have a mild case of 22q di george
Thank you for the information. I am 16 and I am a father but I just got news that my daughter will have 22q and I was getting worried and it sounds like treatment could be expensive . I don't live in a nice area and live in a trailer park . I just wish somehow I can.come up with the money and my current job pays miserably
Javier Rojas ah okay. my advice is probably go into the military to cover healthcare. I’m going into the airforce next year. try to find better jobs with better pay u can try and get into truck driving they make like 60k a year for like a high school diploma and u have to get other stuff requirements for it.
Ryan Winfrey exactly . I get bullied just for talking the way I do everyday that’s what sucks but hopefully I get surgery for it with the common pharyngeal flap surgery soon to help correct my speech
This seems to only focus on 22q, the deletion syndrome. The last few people shown don’t specifically say, but they were all saying they have 22Q and then the beginning explains it as a deletion. Yes, that is one of them but many also have 22Q duplication. I would be happy to help you update. My son has it.
My daughter is 38. She has 22q deletion syndrom. She became severe psychiatric poblems when she was 18. To us it is the most difficult part of the syndrom.
Thank you very much. I have never met anyone with 22q, and I have 22q. I am now 29. I am a musician and a chef. I had to work twice as hard to get to where I am today. I had open heart surgery when I was about 8yo and have had over 20 other surgeries. Many on my ears due to hearing problems. I also recently discovered seizures are an aspect to 22q but only less than 6% of 22q people can get seizures. I started having the seizures last year. The father in the video said it very well that there are challenges and as we get older but it also gets easier. I have made it so certain things work for me best. What's hardest about that especially growing up is not everyone understands what I have and they didn't really know what 22q is. Having 22q for me is about having challenges in front of you, and trying your best to overcome them. I hope to someday meet others in person who have 22q. Much love to others who have it and much love to the families who have the patience to help us through it.
Hi Peter, I run @22qAwarenessDays on twitter and have a page on FB. If I you'd like to meet some young adults like yourself pls pm me and I will try and direct you to both youth groups and try and help you get in touch with someone locally who also has 22q. I live in the UK and am mum to a 13year old diagnosed with 22q at 13 days old, a week after her open heart surgery. She's doing great too.
Peter Mason I have it but not as bad as this. I only have a few symptoms from this and I’m actually smart. Idk if the symptoms various or how is it diff from person from person
@Hallie Minella Feel with ya!
@@sergioblanco6321 Yes the last past It's true
My little daughter has 22q. She has just started mainstream school but one does wonder if this is the right choice. Did you attend mainstream or a special needs school?
Aw, touching. I had a girlfriend that had this and schizo effective. She had it rough. Both of her parents passed of cancer. She now lives in a group home. She got severely bullied. I didn't judge her looks at all. She is pretty inside and out. I broke up with her because of her strict care taker aunt. She wanted to be with me so bad and I did to. She was long distance. She became unstable but I kept her out of the hospital for 8 months. So I respectfully had to break up which broke me inside. Also my heart. I truely loved her. Maybe someday we will reunite in this life.
I'm a medical student and I found this video very helpful. Definitely a condition to look out for in hopes of having early intervention. Thanks.
My daughter has deletion 22q11 . She was diagnosed at age 3. She had two open-heart surgeries to repair tetralogy of fallot. She is now 27 years old. The daily emotional and social challenges are great. As many of those with this syndrome understand. May God bless you all and may you find strength in His Divine Providence. As Jesus Christ, our Lord and Savior tells us , With God all things are possible!
Hi @Annie my Daughter has 22 q can you help me please.
Can you share some inspiration or upbringing tips? I am currently depressed and heartbroken for my daughter.
my unborn son has just been diagnosed with 22q what an inspiration all you people have been watching this video today xxx
My unborn daughter just diagnosed with 22q too. What's the size of his deletion? How is he right now?
Hugs 🫂
As someone who has 22Q/DiGeorge Syndrome I thank you guys for spreading awesome about this syndrome.Cool to see other kiddos with DiGeorge!(:
Our daughter, now 18 has had many of the same issues as others with 22Q, VCFS, DiGeorge, whichever you prefer. It’s been horrible at times, yet rewarding to her and the rest of our family as we learned to understand just what the differences between her abilities and disabilities were. We, friends, family and the best specialists, namely Dr. Joseph Cubells (Atlanta) have guided and supported all of our efforts to help her just be her true self. She’s awesome!
My bitty baby was diagnosed with deletion of chromosome 22q11 syndrome. I love every bit of her and wouldn't change her for the world!! I have a bunch of sweet videos posted of her on my channel!
My youngest son and I would advised that my son, 38, was born with 22Q but as his parent I was NEVER told, I was only told yesterday. He has missed out on years of support, scrabbling to find him that support now and support for myself and his sibling.
This was an inspiring video. To be able to see challenges of other parents of a child with a chromosome abnormality. And to hear the help they got there kids was breathtaking. Thank you
I have 22q and no heart problems but learning and speech
thanks for the video. my son has 22q11.2 he is 9 year old we live in dubai
Can I contact with you Mostafa my son has a 22q and I don’t know what to expect
I had a little girl in speech therapy with this disorder. She was beautiful and her mother worked very hard with her. She is also autistic.
I have identical twins who are 5 months old now. They both have 22q and severe heart defects. One of them have had surgery and the second still needs to do it. I am glad I found this. There is so much my husband and I don’t know.
My son was born 3 months ago also diagnosed with 22q, he currently has an NJ tube and in the hospital still. I've never heard if this diagnosis before. Thank you for sharing this video.
Hi I'ma adult I suffer with 22q eleven deletion wotch out , for cleft palate eating problems x I get food stuck in my throat and allergies to food as I got older ,hope I helped x
I have vcfs in 38 years old. My mum is 62 and also has vcfs. I had speach therapy as a child. My mum had faryngo plastic operation. I research this opeation too but doctor didnt wanted to operate me. My voice was to good. . I have a normal life i went to regular schools. Finished higher prof education in 2002. I work full time and have a car (automatic like in america).
I have this as well but i'm 18 living a full and fullflling life working and graduated from highschool and all that fun normal stuff except for me i have the part where i have a heart condition not autisim
thank you for the hope...God bless you all...
My child has 22q northern Ontario Canada thanks! raise awarenes!
I've got 22q I had to have heart surgery but I'm now 15 and so far im fine
My name is Senni and i am from Finland. I have 22.q.11.2 Syndrome. I am fourteen🙏 I subrice this channel.
Hi Im from Germany and I have 22q too. Are you still on YT?
We are trying to start our Channel that's about our lives around Q22. 11 deletion syndrome. If you would like to follow I have our kiddos journey on our site! We are also getting ready to have baby #2 and waiting to find out with the 20 week ultrasound what we are going to expect as I am a gene carrier. It would be good to connect with any other parents/ family members dealing with this !! Give us a shout out! :) We love our Q22 kiddos so much.
The Ricker Fam *following*
My 8 yr old son has Smith Magenis Syndrome- deleted chromosome 17. I had the pleasure of having Barbara Haas-Givler & Dev. Ped. Dr. Jane Charles give my sons school a consult. I'm a researching mother, and they told me about a few similar syndromes- which landed me here😊
Meronda Roumillat understand! I'll be posting some more videos on it it's just been busy with expecting number two you can watch my video on our fetal heart ultrasound for baby #2 at the specialist:) so far no heart conditions!
Yes come follow us I do small updates on our first born and will do more on our second once he's here in March 2018:)
Madam I want ur help my son having duplication syndrome I dnt know what to do
My Son has this and has just turned 2 years old.
Hoping to find more on duplication, seems to be more information on deletion than duplication. Any help would be great.
eyyyyy I have 22Q. I was diagnosed with it in fifth grade. Now I am a freshman in high school.
I'm going to be an exchange student and my host family told me that my host sister has 22q. Is there anything I need to know in order to get along with her?
My daughter is 45 years old; she was diagnosed with 22q when she was 25. Her worst problems are the psychiatric ones. Psychosis that are very difficult to treat with this syndrome.
i was born with 22 q sometimes when I ask my mom and dad about what I have but I feel like my mom and dad don't wanna talk about what I have I feel like they get embarrassed about what I have but I stay strong for my self and stay positive someday it is super hard for me at frist to acppetd what I have but I am trying to learn everything that I have
I have a friend that has 22q as well. He does have some health issues as well that are associated with this condition. He has no T cells, and can’t sweat when it’s hot outside. He also has low calcium, and goes to see a doctor for that and takes medication too. His body is not always warm, so he gets cold as well. My friend also has a unique face that is associated with 22q. He goes to a doctor once a year that specializes in this condition
My grandson has no thymus gland he is 4 months old so no t cells how old is your friend has he no thymus gland also?
It got diagnosed when i was 13 years old but the files are missing. Now i got a very weak imune system and im always sick and cant work, the doctors searched for this file. Im turning 22 next month. But im just frustrated that they needed almost 10 years to find this file and this proof i really have a weak imune system. They always thaught i was liying or i was too lazy for school.
(Sorry for bad english)
I'm a mother and i have 22q.11.2 and i have 3 kids with 22q.11.2
Gracias por conocer más de este síndrome
I am seeking help for my 3 months old baby just pronounced of it by the medical team.
Please reach out to me, facilitating early intervention...
We need it's appropriate health care/ management providers.
I just want to hang up together 😟! We share eachothers problems.
Too bad most of us are too far away.
I have the syndrome ....I had the soft cliff patele in my mouth good to know theres more surviers here with me.
😘 hi .mi daugther 15 year old .have di george syndrome .she is beatifull. Girl .I love ❤💖💚💙💛💞
My son and I have duplication. We both have learning disabilities and he has a host of other behavioral issues. If anyone else has duplication, it would be nice to talk.
Hi Elizabeth, our son has microduplication on Chromosome 5p (14.3 -14.2). If you need a chat , do let us know. best wishes
My daughter and grand daughter has 22 duplication . Cognitive and behavior issues
What are the behavioural issues he is facing?
My son having duplication help me
I'm diagnosed with 22Q 11.2 deletion syndrome
And I'm 26 years old now
I have 22q 11 deletion syndrome but I got diagnosed when it was called Velo Cardio Facial Syndrome
I have 22q!!!!!!!!!!!!!!! My thyroid is missing so I have to take a pill every morning and wait 30 minutes before I could eat :/
(I’m 13, turning 14 in May)
What about access to diagnostic tests, & insurance cost especially for people of color?
I have it . It sucks.
Queen Melissa Im a little curious What sucks about it?
Javier Rojas a lot of things u always worry about to have children u can never date u speak different. And I get bullied a lot. because ur nasally. yeah I got it I experience it. But it more mainly had to do with puberty for me my real voice is coming in and I might start dating I just have a mild case of 22q di george
Thank you for the information. I am 16 and I am a father but I just got news that my daughter will have 22q and I was getting worried and it sounds like treatment could be expensive . I don't live in a nice area and live in a trailer park . I just wish somehow I can.come up with the money and my current job pays miserably
Javier Rojas ah okay. my advice is probably go into the military to cover healthcare. I’m going into the airforce next year. try to find better jobs with better pay u can try and get into truck driving they make like 60k a year for like a high school diploma and u have to get other stuff requirements for it.
Ryan Winfrey exactly . I get bullied just for talking the way I do everyday that’s what sucks but hopefully I get surgery for it with the common pharyngeal flap surgery soon to help correct my speech
My son is 6 and we just found out he has microdeletion syndrome 22.
My daughter has it. It's heart broken.
Hello .can we Talk?? About this syndrome
Is it 22q the same as Cayler
Syndrome?
Would I still be able to get pregnant. I had 4 miscarriages. I want a baby. I feel like they will have to see a high risk doctor
日本から失礼します
私も同じ病気持ってます
お互いに頑張りましょう🔥
My best friend has 22q
You have now im 44 i have never under. Srood my son has xand my elderst daughter not my younger daughter she as adhd
There is different between 22q and 22q13
im 13 i have 22q11.2 i go to CHOP CHILDERNS HOSTPATIL OF PHILADELPHEA
i'm 28 years old and i have 22q i struggle
Passive 22q11.2
This seems to only focus on 22q, the deletion syndrome. The last few people shown don’t specifically say, but they were all saying they have 22Q and then the beginning explains it as a deletion. Yes, that is one of them but many also have 22Q duplication. I would be happy to help you update. My son has it.
I have 22q!
I have 22q
My daughter is 38. She has 22q deletion syndrom. She became severe psychiatric poblems when she was 18. To us it is the most difficult part of the syndrom.
Traduzione in italiano
Im have 22Q11
?
I'm am age 30 I'm am 22q I have take to tablets everyday fun loving
They like annoying and brakeing
I have 22q
I have 22q
I have 22q
I have 22q