Is there anyone out there with digeorge who is an adult ? Where do you find informtion for adults who have digeorge I only find information for children when I look online. which is good for my dauther but I want to know what I need to be doing for myself and find out how digeorge effects me personally
I am in contact with several adults with DiGeorge. Where do you live? How can I help you?
Cassaundra
Hi! I also have Digeorge Syndrome; I just check with my regular doctor, I’m pretty much done with all of the specialist, acept whenever I’m pregnant, which will not be happening anymore since I found out that I have Digeorge. We lost our third child through this syndrome, and I wasn’t diagnosed officially with it until after her death… My other two children are healthy and as far as we know do not have it, but can be potential cariers later on but we chose not to have them tested until they wanted to… hope this helps…
i am 33 years old lived my whole life with it not diagnoed until had son 95 now hes 13 and have a 6 year old just attached there birthday picture im just really in over my head about public awareness on this not knowing how to get out the word im sure you are all also
hi just put into forum im 33 w disorder not diagnosed until had son 1995 he has it now 13 and my daughter now 6 i was checked at hospitals in chicago when he was born regarding calcium, and heart had aortic arch, 50% tracheal stenosis due to web like kids it all depends on where the deletion is on the arm which links the problems in each person diagnosed but they have put together general guidelines for specialists to see and follow cardiac, hematology (i have and kids von williebrans type 1 also) we just all got on ssi kids and me disability finally due to congnitive delays as i cant tell time etc. like you said its all written down about the kids care i just went and had a full eval at the di george clinic in wisconsin childrens for myself theyve made suggestions and did a hearing test suggested ear tubes deviated septum repair chiropractor and foot lift i have 1 1/2" leg discrepancy was born loose ligaments n tendons now am overly tight always in pain said to work on feet with lifts should help all way up hips bursitis and back pain… as well the teeth dont get me started those dentists always tell me and my kids that digeorge syndrome doesnt make cavities its brushing and what we eat but i disagree could write a 3 page essay on this… im having trouble with getting sick a lot and had a t-cell count done read fine kids are low though at christ hospital in oak lawn other specialists should be checking kidneys some born with one clavicle, ribs etc… im thinking of rhuematology have a lot of bone aches and pains may be due to my calcium… my email micheleloneill@yahoo.com could contact me direct its a struggle being an adult with this for sure!!
oh yah now im on adderall for ad/hd works awesome and switched lexapro to sedating to sertraline combo works well and son switched from straterra for add/hd to concerta much better also
I need more information on di george. My daughter is 21 and has it. The childhood symtoms were mild but now entering adulthood the mental illness is setting in quickly. She seems to be getting worse everyday. I just don’t know what is best for her anymore.