My son has digeorge and tetralogy of fallot he's was diagnosed at a week old, he's 6 now. At first it seemed so had to come to terms with, but now it's just a part of our lives. And for people watching this who's children or themselves have just been diagnosed, stay strong and I promise you will get through it. Xx
I am the mom of a 21 yr. old daughter who also has DiGeorge Syndrome. It wasn't discovered in her until she was 19. She had a seizure also & that's how it was discovered. Like you, her heart is okay. She's had speech & language problems all her life, but does just fine & goes to college. There are many people who are on Face Book who are parents of VCFS/DiGeorge Kids. I think you'd benefit from messaging both the moms and kids. Look for me & I'll help you. ~ Debbie McNair
i am 21 and have DiGeorge Syndrome, they found it in me when i was actually 12 years old. i had my first seizure at a baton twirling competition i do not have the heart part but i have the 22q 11.2 deletion part. it is definitely hard to find people that have this syndrome. i also wish more doctors new about this because it does get frustrating when your own doctors dont now anything about it!
I had found out my Leigh has DiGeorge Syndrome when she was 2. She is going on 10. I am very lucky to have a team of drs that has her best interest at heart. We are about to add another dr and im hoping that they will to want the best for her for the next 10yrs.
Omg Amanda im fall down and gonna cry. Of happiness. Its so hard to find people with this disease. I have 100% same exact problem as you! 25 also! Its hard to deal with are you on liquid oxygen ? I am. I found out since Birth. Low calcium which lets seizures happen. It like everything else is normal but the digeorge mess you up. Do you have a trache scar? Please feel free to contact me. Take care God bless you. :)
I have Di-George Syndrome, took my mom awhile to convince the hospital to take a look at me, and I had a seizure while I was hooked up. I have Low Calcium problems. And my Heart is on the left side (The main vessel that pumps), I am 22 and fully healthy, sexually, and sortof mentally :)
me and my 2 sons have di george syndrom i dident know i had it til i had my 1st son got told not 2 have any more kids i did had a other boy who was worse than the 1st 1 hes had over 30 hart ops and got a pigs hart in 2007 is the only child in briton to have it done he meet prince harry in 2007 and he gave him the bravest boy in briton ive got 2 brave we guys who are not giveing up on life they just keep going i love them to bits
My son has digeorge and tetralogy of fallot he's was diagnosed at a week old, he's 6 now. At first it seemed so had to come to terms with, but now it's just a part of our lives. And for people watching this who's children or themselves have just been diagnosed, stay strong and I promise you will get through it. Xx
hollyshaw1984 1 week ago
@twirler4ever1
I am the mom of a 21 yr. old daughter who also has DiGeorge Syndrome. It wasn't discovered in her until she was 19. She had a seizure also & that's how it was discovered. Like you, her heart is okay. She's had speech & language problems all her life, but does just fine & goes to college. There are many people who are on Face Book who are parents of VCFS/DiGeorge Kids. I think you'd benefit from messaging both the moms and kids. Look for me & I'll help you. ~ Debbie McNair
stefsma 6 months ago
i am 21 and have DiGeorge Syndrome, they found it in me when i was actually 12 years old. i had my first seizure at a baton twirling competition i do not have the heart part but i have the 22q 11.2 deletion part. it is definitely hard to find people that have this syndrome. i also wish more doctors new about this because it does get frustrating when your own doctors dont now anything about it!
take care :)
twirler4ever1 9 months ago
I had found out my Leigh has DiGeorge Syndrome when she was 2. She is going on 10. I am very lucky to have a team of drs that has her best interest at heart. We are about to add another dr and im hoping that they will to want the best for her for the next 10yrs.
KatieAnna95 1 year ago
Omg Amanda im fall down and gonna cry. Of happiness. Its so hard to find people with this disease. I have 100% same exact problem as you! 25 also! Its hard to deal with are you on liquid oxygen ? I am. I found out since Birth. Low calcium which lets seizures happen. It like everything else is normal but the digeorge mess you up. Do you have a trache scar? Please feel free to contact me. Take care God bless you. :)
Appleipodzrulez 1 year ago
I have Di-George Syndrome, took my mom awhile to convince the hospital to take a look at me, and I had a seizure while I was hooked up. I have Low Calcium problems. And my Heart is on the left side (The main vessel that pumps), I am 22 and fully healthy, sexually, and sortof mentally :)
philipkimbrell90 1 year ago
How can I contact this doctor?
DeviantCandy 1 year ago
me and my 2 sons have di george syndrom i dident know i had it til i had my 1st son got told not 2 have any more kids i did had a other boy who was worse than the 1st 1 hes had over 30 hart ops and got a pigs hart in 2007 is the only child in briton to have it done he meet prince harry in 2007 and he gave him the bravest boy in briton ive got 2 brave we guys who are not giveing up on life they just keep going i love them to bits
mambolsster 1 year ago
can everybody translate this in german? Many many thanks
CriCriShop 2 years ago
I was diagnosed with 22q-11 deletion syndrome at the age of 26 age 31 now, without a clef palate
trc7880 2 years ago