THIS IS WHAT ITS LIKE LIVING WITH 22Q SYNDROME

Thank u for watching subsrcibe if your new

[@Jstras77]

Thank you for this video. I also have 22q deletion. It’s not easy but I’m still here at 53. ❤️

[@Johnsmother]

Thank you for your courage and willing to provide awareness of 22Q deletion! Continue being a voice and we share in that with you. Thank you

[@aichan_92]

I had also heart surgery and a lot other surgeries, i have 22q too, i'm from Finland and now 25 years:) great video!

[@22QAwareness]

thank you Laura and wow Finland well thank you so much for watching my videos glad you could get something out of it feel free to subscribe to my channel if u like :)

[@1Deejay7]

Thank you very very much for the video. My son has been diagnosed with digeorge. He's 8 now and has been through multiple heart surgeries. I'm learning along the way how to best advocate for him

[@22QAwareness]

God Bless you and your son!!! hopes everything goes well :) hes gonna end up being strong and sharing his story like me!!! his voice should be heard too thank you for watching my videos really means the world to me. please feel free to subscribe to my channel if like merry christmas :)

[@Bigpeter77]

You’re an inspiration and keep up the great work spreading awareness. Your positivity is amazing thank you

[@xxmiadalyxx5489]

Hey I have 22q aswell I was digonsed at 12 years old no one knew, and I used to have strong outbursts, anger issues and other things. I also have scroliosis. And what you said about the math problems I also had that too it’d take me ages just to answer one question but I had great friends who supported me 👍🏻

[@22QAwareness]

Mia Your amazing :) we are all in this together!!!! my goal is to make 22Q Syndrome no longer a syndrome so glad you have friends that support you:) also feel free to sub to my channel if u like!!!!!!

[@xxmiadalyxx5489]

Jman G Thankyou so much! I will sub 👍🏻

[@m.t-thoughts8919]

Mia Daly We must stand together! Wow I have Anger issus too. Im 20 😘

[@jeffwilliams742]

Mia Daly same here I hated maths it never made any sense because they didn’t explain it for me to understand I still have trouble but plenty of practice and I had trouble making decisions and think things out before I commit

[@red-bv7rv]

@@22QAwareness ❤❤

[@prican303]

Thank u for sharing ur story ❤

[@AshleyNightmare26]

I also have 22q. Some days are great and some are not so great having this so I know how you feel. Pretty much live at the Drs. Gonna be needing heart surgery next month as well to fix my right sided aortic arch which is also rare to have but, I have it because of this syndrome. It’s nice to not feel so alone watching your video, Thankyou for posting this. You’re awesome ❤️

[@22QAwareness]

Ashley, your so welcome glad I could help anyway possible :) stay strong youll get through this were in this together!!!! thank you so so so much for watching my videos and good luck on your operation stay strong! and please feel free to sub to my channel if you like!

[@AshleyNightmare26]

Thank you so much! And Thank you for raising awareness what you’re doing is amazing we need more people to know about this. Also I saw a couple more of your videos after seeing this one and saw your from Boston which is crazy that I just found your channel last night when I literally just went to Boston for the first time last Wednesday to go to Mass General Hospital to see a Cardiologist there for my surgery that also knows about 22q. I’m from CT and literally no one here knows about it which is why I made the trip to Boston. I will be going back there in January to visit the 22q clinic for a couple more tests and possibly be having my surgery there, maybe we will run into each other one day soon!

[@carlyg8051]

@@AshleyNightmare26 hey girl! Just stumbled across this video and was looking thru comments and found yours about you having a right sided aorta too..OMG I have one also as well as 22q and all my doctors said my right sided aorta isn’t an issue since I’ve been fine with it my entire life… (though I found out I had a right sided aorta in 2019 !) but I don’t feel like it’s “normal” I wonder why none of my doctors haven’t told me I should get surgery on it… I’d LOVE to chat more about this!!! I hope you’re still active on youtube and will get my message.. let’s connect somehow! Do you have instagram???

[@kparkslpnful]

My son has 22q but thank goodness he doesn’t have a heart issues. He had to learn something on Monday though and then learn that again on Tuesday plus learn Tuesday’s work and so on through the week. He was treated awful by teachers until I was able to finally convince a doctor that he needed a genetic test when he was in 6th grade. I was then able to show his teachers why he was so “immature” or “irresponsible” as they put it and we were able to make a better plan to help him graduate last year. I’m so proud of him and all 22Q diagnosed kids because they work harder to achieve the same things that come easier to the rest of the world.

[@22QAwareness]

Your son seems like a nice dude! tell him he needs to let his voice be heard when he gets older tell him he needs to make more of an awareness!

[@kparkslpnful]

22Q syndrome Awareness can you dm me? I would like to talk to you about some things related to this that I don’t feel like is appropriate here related to depression

[@BryanClarkFerguson-xc6uc]

I'm 57 with Digeorge Syndrome. I live in St Louis Mo

[@robg4238]

Thanks for the video

[@amandaandrich4886]

Hey I had to delete my old account but lets be buddies I never met anyone with 22q

[@louiscavana4997]

I have 22Q I have open heart surgery to when When I was a baby to. I hope so we can be friends too

[@boscoitalics]

I have it also diagnosed a few yrs ago

[@22QAwareness]

oh wow really hopefully our syndrome can get a more awareness thats my goal and hey please feel free to subscribe to my channel :) thank you for checking out my video

[@biggdawg2912]

Bro why u make Short vids

[@22QAwareness]

i dont want them to get too boring hat what i am sayin

[@biggdawg2912]

@@22QAwareness why wtf I would watch my self eat a good same peace of shit

[@biggdawg2912]

@@22QAwareness I'm just playing around with you

[@biggdawg2912]

@@22QAwareness make at least 10 min vid

[@22QAwareness]

oh heyyyyyyy you got me lol

[@SamuelBettiol1986]

Hello from Brazil. Our son, Gabriel, is 22q and almost 2 years old. It's really cool to see people like you sharing information about life! This causes us to have more and more courage to face the problems. May God continue to enlighten your life, and may its contents help more and more families around the world. A big hug!

[@22QAwareness]

hey sam thats awesome i am glad you find my videos helpful :) and feel free to sub if u like !!!!! so cool to get fans from Brazil!

[@andrewwilliams9537]

Hang in There. Mental challenge s when adult. Head ups. But happy life 😊

[@robloxgamingfunwithcaitlin7015]

@@22QAwarenesshi I have 22q and I have a hard time with socializing so I sign up for adult day program in Lakewood it’s called inner pieces

[@maggieallen6499]

Great job raising awareness!! You’re doing an awesome job, also HAPPY BIRTHDAY🥳

[@melaries1823]

Aw I feel this I am 19 years old and I had a VPI surgery where they take the fat from your stomach inject it into the throat to help pronounce words better. I didn’t get it as bad just my hearing and speech. I wish everyone who has this the best in life

[@22QAwareness]

god bless u you are so so strong!!!!! thank u for watching my video I am so blessed u are okay!! feel free to sub to my channel if u like

[@m.t-thoughts8919]

A Faceboock Page for People like us would be great were other People like you and me can meet!

[@22QAwareness]

I totally agree 100% Devilman!!!!

[@kparkslpnful]

There is a Facebook page for 22q. I used to be part of it but haven’t checked it out in years. I’ll see if I can find it

[@andrewwilliams9537]

Agree or even zoom meeting as in Australia

[@m.t-thoughts8919]

@@andrewwilliams9537 Thats great, well now we have Discord

[@shannonkane3728]

I have 22Q. I am 29 now but when I was diagnosed with it in 2003 it was called VCFS. It helps to know I'm not alone.

[@Nazyaali110]

You have such unique strengths. You have so many advantages over the average. I hope you are utilizing your gift to live your dream!

[@rianshannon7678]

I have the same thing! 😃

[@22QAwareness]

god bless u thank you so much for watching my video!!! so happy u love them so cool we all have 22Q!!!! feel free to sub to my channel if u like

[@rianshannon7678]

Jman G if u have a facebokk u can add me 😀

[@frozyFX]

Me too

[@red-bv7rv]

Do you have a FB or social media page? My daughter is 20 and I'd like to connect her with young adults with this!

[@UnrealTech9403]

Saw one of your videos about people being mean to you. My only advice is stay away from social media as much as you can, the internet is cruel to everyone which is why I spend as little time as possible on social. Regardless of whatever afflictions you're suffering people will always be cruel, they'll latch on to whatever they can to hurt you because there are sadists online. It's not a real representation of people. I would focus my energy on real people in your immediate vicinity, it's not a nice place. If you tell them they're bothering you they will likely gang up on you more, they are parasites just looking for people to harass. Don't give the social media world your energy it's not worth it. The internet sucks, you seem cool though. Don't let the haters get you down, they live for it because they are pathetic and you're probably way more cool than them. They're just good at it because that's all they are good at.

[@jeffwilliams742]

I am 50 just do what makes u happy and don’t worry about other people i found out about it when I was 47 I hear ya

[@22QAwareness]

eyyyy don't worry about it brotha thanks for watching my videos :)

[@jeffwilliams742]

The only thing I got was health issues learning difficulties bad chest infection from bad immune system every day was is struggle but hang in there it not gonna get any easier take each day as it comes

[@22QAwareness]

thanks for watching my videos Jeff really means so so so much !!! i am glad du can relate to me

[@jeffwilliams742]

No problem don’t give up

[@fir212]

Im 15 weeks almost 16, my baby girl was diagnosed with 22q. Is a new chapter in my life. I am be here to support her everyday ❤ when she arrives 🙏. Thank you for your wonderful video, you really inspire others 💞. Keep it up! 💪

[@soniafrancisco2433]

I'm happy to see people succeeding with such problems, my brother has the same syndrome but it affected him more seriously (he can't speak or walk, and he's like a baby in an young adult's body

[@mattrando5291]

Thank you for making this video. I really appreciated learning more directly from you.

[@joycloud]

My grandson has this. He’s doing great. Your video brings me joy to see how well you are doing and what the future may hold for him.

[@nutmeg9593]

Hello from Atlantic City. I’m 22Q as well. I’ve been lucky though and have never needed surgery nor had any medications. It’s nice to come across someone else that knows what it is. God bless and thanks for this video. ❤

[@livvieblair9506]

I had open heart surgery when I was 2 weeks old you're my biggest insporation xoxo

[@Ryanspookie]

I have 22q11 on the lowest spectrum and i completely understand you keep moving on bro you got this! I don’t have heart problems but I understand you a lot with the learning, speech and difficulties.

[@kparkslpnful]

My son had to have his math papers cut into sections because if he saw, say 20 problems on the paper, even if they were crossed off it would still make him severely anxious because he still would see he is on number two and think he had 18 more to go. The special ed teacher got them to cut half the problems off the paper and then he was able to do them better because he could count and see he only had 8 to go or whatever it was. I actually think they cut his paper into problems of 4 each and worked those 4 and then moved on. I hope that helps people with kids still in school.

[@22QAwareness]

tell him to let his voice be heard and raise an awareness for #22q :)

[@andrewwilliams9537]

Also cut the word up in speech. So as Andrew. And/Rew

[@Duhitzmarina1]

I just saw your tweet under Bryce Hall's one and I wanna learn more about 22Q

[@AndrewMundellAndrewJMundell]

I just watched this again Justin and I'm learning more from you every day. Stay Strong!

[@22QAwareness]

thanks man keep up the support

[@aidakko]

I have chromosome 22q trichotillomania social anxiety

[@ShayanAziziPiano]

You're a strong, brave, cool and courageous dude! I like the instruments in the back too :D

[@22QAwareness]

hey man thank you so so much for watching my videos please feel free to subscribe :)

[@warriorspirit4094]

i have this i have a tof and cleft palate after cleft palate i cant speak clearly

[@jake24685]

But you speak so clearly ? How ? I have it and I don’t speak clearly 😢

[@melaries1823]

Pedro Q The gap can cause air leakage which without surgery can get worse. Pharyngeal flap surgeries may help reduce difficult speech

[@kelseyfloyd9909]

How can I overcome speech impediment

[@greeneyedempress6579]

Do you have 22q11 deletion or duplication. My son just got diagnosed with the duplication.

[@22QAwareness]

Tell Him he will remain strong!!!! if theres anything he needs help with i can help you guys with anything !!! please feel free to sub to my channel if u like :) god bless him

[@greeneyedempress6579]

22Q syndrome Awareness what your email? My son is 26 months ( 2 years) and non verbal . They diagnosed him with asd and delayed .

[@mammadingo9165]

How's your wonderful son ?

[@moodykitty5902]

I had heart surgeries to I have digeorge syndrome scoliosis and anxiety . I had a heart surgery last year pulmonary valve replacement as well. I'm 22 now and I struggled a lot I got tired easily it's just hard . I also had one when I was a baby they called my surgeries tetrollogy of fallot is yours ? I had four holes in my heart when I was little maybe we can become KZbin friends I tried contacting your Twitter mine is moody kittyy two y's also the valve replacement they said mine was cow !:3

[@22QAwareness]

I am so sorry that you've gone through all of that :( i know how hard and tough it is living with it trust me i really appreciate you being a Fan and being so supportive makes me n so happy!!!!!!!

[@moodykitty5902]

JustinGIGS Justin do you have an Instagram or Twitter that your active on I'd like to tell you my personal story if you wanna hear it

[@aichan_92]

moody kitty hey i also had scoliosis, heart surgery and i have 22q too. I would like to be friends if you want!^_^ im 25 years old from Finland:)

[@_Pat1984_]

My 11 year old son also has it keep your positive Attitude and thank you for sharing your story god bless 👊

[@hallie1403]

I have 22q! I had to get open heart surgery twice because of a valve problem. Ever since I have been doing okay!!

[@Ryanspookie]

I’m also autistic :)

[@travoniaharris3433]

Thank you so much ! My nephew has it. I wish there were more kids like him so he can make more friends in common with him. Some kids are understanding and some aren't

[@22QAwareness]

I will be making more inspiring videos in the future to help people understand better what really is 22Q and how we can make it more of an awareness!!!!! and please feel free to sub to mu channel if you like :)

[@Goincom]

😢

[@jeffwilliams742]

I guess I was lucky but nearly got digonosed with autism at a young age I couldn’t speak for a long time or put words together and pronounce words lucky my daughter has better back up in education than I did growing up and suffered depression caused by the syndrome but now I understand it a lot better and keep to my self if feeling depressed or keep my self busy

[@22QAwareness]

Jeff your the man!!! let your story be heard!! i hope my videos make you feel inspired and happy :) thank you so so much for watching my videos please feel free to sub if u like

[@greeneyedempress6579]

When did you started talking ? My son just got diagnosed with autism . Just think it’s the 22q11. He has tantrums and hits his head or throws himself back when I say no or stop . He is 2 and worry about his future

[@livvieblair9506]

I have 22q

[@andrewwilliams9537]

I have this to. I am 38 male gay in Australia. Not been easy ride. But with surport. I live alone and work 4 days week. And go to gym ,5 days week lost 40 K now 83kg not easy to grow up with this. Take each day as it come.am on depression tablet for anix not keen on social setting get very nevours. New people

[@sonnyceeplaylist6337]

❤🤗🙏✌😎👍

[@smalltiny]

my son was just diagnosed and it has been eating away at me, thinking how his life will look 20 years from now. like if he'll be able to support himself if anything happened to me.. i don't know what the future will bring, the struggles of today are hard so i worry a lot that it'll get more difficult as he ages...

[@CreativeJewelsAdventures]

Hi!! I am Juliann I also have 22q I know you don’t really see that I do but I do I do have hard things like you. I have had 3 heart surgeries in my life so far it’s crazy. I watch your videos every once in a while I’m subscribed to you. When i find them I try to watch them. That’s incredible that you can do this. It would be hard for me to do a video on my Syndrome but if I do one day I will. I’m writing a book about my life. I also love to read and journal it helps me focus. I do have a job that I love and it’s going really well for me.

[@jeaniee.6283]

Hi Justin! I found you on Twitter and thought id watch yr KZbin vids. Love them. Ive learned from you.this video is older but i see musical instruments in yr rooms. Do you play anything?

[@sylinaaaliana]

Yasss we are strongggg💓💓💓🍼🥰

[@Blaze-ds1fn]

Thank you my sister and my mother have it

[@lisadianatejeda9051]

Are you an artist Justin?

[@kyletwebster]

❤️

[@22QAwareness]

thanks so much for the support man

[@siddhipatel4584]

Stop

[@jonathanbuehler421]

Who’s the dusch that disliked this vid

[@22QAwareness]

ask them prob a hater ha