22q Deletion Syndrome: Kirsten's Story
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- Опубліковано 25 жов 2012
- To learn more about the 22q Center at Nationwide Children's Hospital, visit bit.ly/19jBxKC
Learn more about 22q (also known as 22q 11.2 Syndrome) here: bit.ly/11mZd9i
Get in touch with one of our 22q Deletion Syndrome Specialists - bit.ly/11mY2Xj
There are a variety of physical and behavioral disorders that are linked to 22q deletion syndrome (also known as 22q 11.2 syndrome). 22q deletion syndrome has the potential to impact every system in the body and can lead to a wide-range of health issues.
Kirsten Hercules represents one of our patient families who came to Nationwide Children's Hospital upon her diagnoses for 22q deletion syndrome because of the comprehensive coordinated care that our 22q Center provides. Our 22q Center's multidisciplinary team works together with the families in order to optimize care and provide the best outcomes for every child.
My son has 22q and is 8 and doing wonderful. He has had open heart surgery and Ot and speech therapy..Vpi surgery so far. He is the light of my life.
I'm 30 I have 22q11 and with heart condition my hearts strong now. But the emotional struggles are still like possibly austim. And adhd that can be part of it only just startinng to learn more and accept it part of me. It refreshing knowing there are others with it too some doctors don't even understand it ❤
Hi, hope you son is doing well. Is there a way we can connect? a very close friend of miine her son is having same syndrome
@@lilheart3094 girl, I understand and his father is a narcissists that blames me for his issues. Which I’ve done in the past, but have made my amends. The distractions are sooo hard and real!! It takes sooo much strength to focus!!!
I’m 33 with 22q. Speech impediments my whole child hood life. My son has 22q, and congenital athymia.
I didn’t talk till I was 3 and always had ear infections. Sick. Learning issues. I was pregnant and got tested about 4 months, found out we both have 22q. My son has Congential Athymia also which is Complete DiGeorge. We’re out at cook in Ft Worth! ❤
Hi my grandson has congenital arhymia how old is he and what treatment is he having as he will have no effective T cells
@@stevewimpress6096 he’s had a ton of treatments. I’d be happy to discuss in email if you felt more comfortable. Rather than discussing through comments. :)
@@stevewimpress6096 take him to GOSH in Europe. Or to Duke University in North Carolina, USA.
my daughter who is now 6 yrs old was 1st DX with DiGeorge Syndrome but thru our Genetics Doctor she is below the quidelines and there is no name for it. She does have similar factors just like Kirstens story but we are still learning as she goes thru life. No one else in our household has this chromosomal deletion. Fort Worth TX
Michelle, please connect with our team by clicking here. bit.ly/11mY2Xj. We'd like to help if we can.
My son has 22q and Congential athymia. We’re also in Fr. Worth :) I have 22qz
What was the surgery performed to help her speech ?
I lived with it for 47 yrs until my daughter was born never knew what was wrong until I had fish test
Hope all is well now, Jeff! Thanks for watching!
I have 22Q as well. I was diagnosed with it in 5th grade. I am in high school now. so ninth grade. so I had it for... 4 years I think. I was also diagnosed with a seizure disorder because I had two seizures in one night. and that was at the hospital when it happened, so they put me on medicine from preventing me from having seizures again. I only have them once a year.
Is having very small ears even as an adult something that is seen with people who have 22-11?
Yes, I have DiGeorge and that's common
Grate Job Amy!
have 4 children deletion 22 pass it grand kids,
1 son he more then other totly be watch he 29 yrs,
What kind of surgery did she had that help her talk better?
Great job Amy!
~Tonya~
Dealing with this is depressing I was born with this
I hope you ok I have it too it’s hard but you have to make the best of it
I didn’t talk clearly to I was 5 and I have 22q syndrome :)
Like, even though your 22Q11.2 is hosed, you're very cute. You go, girl!
I know this video is old, but 22q sucks. I know because I have it, and my mom has it.
I do too, what makes you hate it? Mine is the social skills :(
My name is Hernandez I was baby born velocardiofaicail syndrome and I have speech impairment and I graduated from high school 2009
And got school diploma and I am rearly retired
Go you! Congrats!!