I am 51, 52 in October. I have 22q11.2. I have immune system issues and lung issues mostly. Main problems are allergies, asthma (breathing), and thyroid. I think I may have calcium deficiency issues as well. Sometimes my lab works come back calcium is on the low end of normal range and sometimes it is a little low. I also have velo pharyngeal insufficiency along with several other issues. The biggest thing I am dealing with the past few years is seizures. As long as I have the seizure medication I am fine. As soon as I miss more than 1 dose I go into seizure fits. I was diagnosed with it about a month after my son was born. He has it as well, he is 18 now and has heart defects. He has interrupted aortic arch type b, two holes in his heart, bicuspid valve, heart murmur, and something else. Everything is repaired now, but murmur. He has had 4 heart surgeries and several other procedures done. Public school system diagnosed him with ADHD, and we think he is on autism spectrum and possibly has aspergers, but hasn't been tested yet. Special needs teacher at his current school he had one year said she saw both tendencies in him. He has no other health issues except being allergic to cats, he thinks it might be poison ivy tho since the neighbors cats crawl under a fence to get to our yard and that part of the yard has poison ivy. We are coping fairly well with the syndrome and taking life one day at a time.

As one who has 22q, my one word description as to what it's like is it's an adventure. Every day brings new challenges, both good and bad.

@jadevowles9982

7 жыл бұрын

That is an excellent way to describe 22Q!

@yurisanchez1243

5 жыл бұрын

Peter Mason can u help me!!!

@22qartandmusic

5 жыл бұрын

Yuri Sanchez what would you like help with? I find I am Still dealing with health issues as I get older, that part never changes. Just in the last 7 months I have had 5 surgeries and may need more soon, but I am still here. That’s the most important that I can tell people at age 31 with 22q is I am still here! Doctors my whole life have been telling me oh, I won’t be able to do this or that. I have overcome many odds against the doctors! One thing I’ve learned is pretty important as an adult with 22q is to keep seeing an endocrinologist every so often. Over the last few years my calcium and vitamin d levels dipped so low that I also got diagnosed with epilepsy (which only a small amount of adults with 22q have epilepsy). A year ago I fought my way out of ICU in the hospital from seizures, and doing pretty well with the epilepsy as long as I am on medications. I take about 8 or 9 different meds each night, most of them to help with breathing at night (sleep apnea and epilepsy is not a good combination), and some are for the calcium and vitamin levels, and anxiety, as well as other health issues related to 22q I am dealing with. I managed somehow to go most of my 20’s without any major health scares, except for a broken foot which was the result of me being diagnosed with keratoconus, which left untreated can leave me blind. I had two cornea transplants, both successful! One of them was recently, the other one 9 years ago. I am lucky I now have my eyesight better than it’s been! They say 22q has 188 symptoms, yet I believe their maybe much more than doctors know as research has new opportunities with new technologies that are developed. Each person with 22q has our own journey, and we each deal with our own medical issues though some are similar. We are all the same, yet we are all different in our own unique way.

Thank you so much Jade! I'm sat here in tears. Some of the comments made by people in the film really hit home. My daughter was smoothing my shoulders to comfort me. Then my son (8), who has 22Q, came up to me and gave me a big hug. He said, "Look, I'm not crying, Mummy. I'm happy." I nearly started crying again.

@jadevowles9982

7 жыл бұрын

Thanks so much for sharing that here - it's exactly why I have done this, to hopefully make the lives of those with 22Q easier! I certainly know they are the strongest and sweetest kids, and your little boy proves it right there x

i have 22q deletion/digeorge syndrome as well I have a lot of medical problems and learning disabilities but I am trying everything in my power to overcome my challenges

Peggy martin i have 22q i was diagnosed at birth. I feel blessed to have this disablity, it has brought me closer to christ in so many ways. I am now a representing idahos disabled youth i am a returned missionary and love helping others. 22Q has been a inspirational jurnney for not only me but others friday november 15 i will be sharing more about this challeging but uniqe disability KBOI channel 2 news

I have 22q i didn't get diagnosed until i was 15 and i am 21 now , sometimes it really sucks but sometimes im glad to finally got diagnosed after going so long without diagnosis.

@andybell4066

4 жыл бұрын

When you get diagnosed it answers alot of questions but still raises alot more questions especially when trying to balance your life socially. Most especially when it comes to ignorant doctors that don't know how to treat this condition and just ignore it. I know the feels, diagnosed at 3 based upon abnormalities in the Tuple1 section of Red Blood Cells. Didn't find out until I was 15 when I finally got to see my Mother properly (Due to family courts was only allowed to see her once a couple months and even then rarely did). Another annoying thing is when you have to explain the disorder in fast speech because it's very descriptive to explain for some stranger that's a friend of a friend you'd meet at a pub/cafe to understand. Then, when you finally explain it they'll be like "Oh you're alright you're normal" but no, they're wrong they still won't know what it is, "our kind" may seem normal physically on the outside but there's alot of internal & external medical issues that the average peep will get confused about. Just because we can explain our condition doesn't mean our health & other is on the same level as the normies. It almost seems like we are a human hybrid species with warped features. That's what I feel like living with 22Q.

@luckydogwert2524

3 жыл бұрын

I now how you feel i also have 22q and adhd.

@trl9677

3 жыл бұрын

@@luckydogwert2524 i have got Add instead of adhd

@brandywilmoth5829

Жыл бұрын

Me to

Thank you! Helped me a lot on my reading. I am a student nurse hopefully a Registered nurse by 2024😍

What a wonderful documentary! Thank you for taking the time to research and share these experiences with us.

as a person with Digeorge Syndrome this makes me feel a little less alone knowing theres more people out there who struggle socially. sometimes i question if i am really disabled or just pretending to be. it really makes me question myself and what is real. i only wish my perants saw me just a little differently especially my teachers when i was in school.

Thank you for the Beautiful insight on 22q ....Every Child is gifted...they just unwrap their packages at different times.

There are many challenges associated with this syndrome. God Bless for making this video a special thank you for those who shared their stories!

I love this video !!!!!!!!! I wish we could spread and share it more ! You did a great job!!!!!

Very well done. I know 2 children with 22q. I am glad it's being diagnosed earlier so early intervention is possible.

My daughter has 22q she is 3 years old and a real superstar. This video is great well done on making it

Beautiful. They are beautiful. My son is 9 months old and was born with 22q. They are fighters and survivors. The proof is in his 5 surgeries including open heart and ecmo life support all before being 20 days old. They are strong, strong people and i know this first hand.

@andreak3294

5 жыл бұрын

These kids make their parents really strong too! My son is now 14 and has truly made me a better/stronger person

I have 22q and so does my son, he's 2 years old. we are both learning as we go.. he also has 15q and a rare illness called FPIES where he cant process protein properly. its a very difficult situation in our family but if you work at it, you can over come alot of things.. never give up in spreading awareness, if anyone wants to follow my families story i vlog almost daily to show what we go through

I was diagnosed with 22Q at 3 years old but never had the needed support for it including therapy, medical assessments etc, was ignored by the "system" because the average public doctors barely know about this condition. 25 years old now, survived as an artist & designer that has helped dealing with symptoms growing up such as schizophrenia, bipolar, speech disorders etc. One of the many annoying things with it is when it comes to developing personal relationships.

I have 22q and I had A rough start at life. I spent my first 4 years in hospital.

Very well done :O)

My friend has DiGeorge syndrome/22Q and she has self esteem issues and her appearance is affected bit I think she's beautiful the way she is

Fantastic - and I certainly know a lot more in these 10 minutes than I did, open and honest, very insightful! Vicky Facer

@jadevowles9982

7 жыл бұрын

Thanks Vicky! I'm glad you have taken something from it, I hope many more people do so we can get people talking about 22Q!

@jadevowles9982

7 жыл бұрын

Thanks Vicky! I'm glad you have taken something from it, I hope many more people do so we can get people talking about 22Q!

Thank you so much for this beautiful video! I have twin daughters with 22q11 and we are sharing this with everyone in our circle so they can have a better understanding of what it's like for our twinnies 💖💖

@neteiraes8775

7 жыл бұрын

Much love to all the other families who go through this with their loved ones. Be strong! I always say to my twins "normal is boring" 😆

@michelleschafer5417

5 жыл бұрын

Neteira E-S My name is michelle schafer .I have it too am 38 years old

@michelleschafer5417

5 жыл бұрын

Me to

@jk-bx1gz

3 жыл бұрын

Should I have a baby with 22Q 38

@jk-bx1gz

3 жыл бұрын

@@michelleschafer5417 let's talk I would love that jessicabkatan@gmail.com

Great job! We were just learning about 22q in medical school and this heartwarming documentary helped me enormously to get a further understanding about the condition. Thanks a lot! :)

My daughter was diagnosed when she was very young. This is a tough disease for the people affected. My heart is broken for this family.

i have 22q i got diagnosed at birth i'm 27 about to be 28 i have psychosis bipolar disorder ADHD and Autism

I have 22Q was diagnosed in my 20s. There is now 200 different health conditions. There's not enough research on IVF treatment and or having babies naturally as it is passed on. I'm very mild. I think it's a little like autism spectrum in a way. Mild yup severe. There should be early detection!

C'est super ! Serait-il possible d'avoir un sous-titrage en français ?

I have digeorge since i was a baby an I'm still shocked that I'm even I'm alive an I'm so sorry :(

I have 22q and mild Aspergers

My son has 22q12.2 I'd like more information on it if at all possible if you have any references or videos it be very helpful he's 12 and was just diagnosed

Thank you Video very well done I'm a mom of a 17 year old 22q Princess

my bf has 22q.. i at didnt knew at first.. but when he told me that he has. i loved him even more... but im struggling when hes anxiaty attacks.. i have many question can anyone here help me...

@rustyshackleford5743

5 жыл бұрын

That is a touching story, I can help. 33 and diagnosed with DiGeorge/q22

I am a parent of a 22q child. Not only that.when my son was born we never herd of it. Come to find out I also have the syndrome. My son and I both have Tetralogy of fallot. It explains a lot of my childhood sickness growing up! I am 41.

aw I'm so sorry for your loss I have 22q also I have to get infusions for my white cells every month since I was little, I get sick easy if I'm not careful I was told I wouldn't live 24 hours I'm now 38 already lived in my own apartment for 4 years I already worked for 16 and a half years I now go to group therapy for my mental health problems but it's not psychotic I just have depression, stress, and really bad anxiety that causes hair pulling I've over come a lot and I believe every one else with this syndrome can have a change you have to have hope and faith that's what got me through all my illnesses and life challenges all of you can do this and get through this if you need anyone to talk to feel free to in box me or write me a message on my discussion board I pray every one is healed or things get easier and you get through your struggles may God Bless you and I'm sorry for any losses hang in there

@carlyg8051

4 жыл бұрын

Hi! I'm 34 and just recently found out that I have 22q also. I found out in August last year. I would like to chat if your up for it. I know you posted this a year ago, so I hope you get my message!

One word lol it’s a pain in the ass sometimes but keep fighting don’t give up

my boy

Those kids are lucky I didn’t find out until I was 47 after my daughter was born with it and I had to get a fish test I knew I had before I got the results back I knew I was different to kids my own age all ways getting infections and ear infections I knew something was different

I have 22q. It can be tough for sure.

you guys are thinking to much about it. Plant-based diet to heal inflammation, routine, sleep, laughter, play, don't make it harder for them. Music, play dough, sensory play, stem, sand dough, lavender, smells, plants, animals, kittens, coloring, just make their heart feel better by being sincere and not judgmental. The more you analyze them the more they wanna not be here on earth that's what makes a person's soul die if you just judge it. just don't make them feel like there's something wrong with them. We already feel that enough already

@vanesa3033

Жыл бұрын

I agree. I have a child with 22q

Life is not fair

Thanks for this video. I have a great friend and she has 22Q.

Our kids are angels in the flesh they know nothing about being mischievious evil or being deceptive, they genuine shine truth honesty loyalty and love as their light (like a child), that's all they know✌❤...... ours kids are angels in the flesh in ah world of the Damned here on earth!!

My son has 22q11.2 deletion and is struggling to find a girlfriend.

😢😢😢😢😢😢😢😢😢😢😢😢😢

My friend has 22q11.2

@sharoncohen1000

4 жыл бұрын

My baby girls only 2.5 years old have 22q also and its not easy life...

I have 22q11 to i could Really good Think me to talk With Someone from England or other lands There have 22q11 ❤❤

I have 22q also

😢😢😢😢😢😢😢😢😢😢😢😢😢

😢😢😢😢😢😢😢😢😢😢😢😢😢