My DD was just diagnosed with CDG...

[Billmel]

Chronic Granulomatous Disease...she has been sick off and on all of her life, and just recently she has stayed sick with one thing or another, since February. They finally sent her to an immunologist, and this was the diagnosis. It is an immune system problem, her body can't fight off bacterial or fungal infections in her body, she is 20. Why did it take so long for a doctor to find this. They found it through a simple blood test. Has anyone ever heard of this disease? There is no cure, they can only treat the infections as she gets them, and they are saying that she will eventually get one that her body won't be able to fight off.

 

[Disney Ella]

I've never heard of it, but just wanted to say I'm so sorry your daughter is going through this.

 

[ophie]

Actually, I've heard that a very small number of CDG sufferers can be treated with a Bone Marrow Transplant if they have an exact donor match. I'll see if I can find some links, but I'm sure you've googled it as much as possible.

for your daughter and your family.

 

[elliemae1192]

I'm so sorry your family is going through this. There are new medical breakthroughs every day, just try hold onto the hope that they will find new treatments for your daughter's condition. Lots of prayers and pixie dust.

 

[mommaU4]

I am so sorry to hear this. How are you holding up? I'm sure she's getting lots of support, as she should, but sometimes it's just as hard for the parents to hear something like this about their "babies". Makes you feel so helpless. My thoughts and prayers will be with you and her.

 

[KAMLEM]

I think that this is what my friend's son has. He gets sick so easily. She has homeschooled him for most of his life but just this year he went to middle school and he has been sick every other week. He was in the hospital for a week last month because he had an infection on his adenoids that they couldn't clear up. He went back to the doctor on Monday because he wasn't feeling well and it was his adenoids again. They ended up taking both the adenoids and the tonsils out. Just this month he began a treatment where he goes to the hospital and has an IV for 8 hours and it gives his immune system some kind of boost. He will be going in for this every three weeks so hopefully it will help. I'll have to ask her if this is the same thing as what your DD has. Good luck with everything.

 

[Billmel]

Thanks guys for the information and the kind words of support. She is waiting on some further test results which we should have within a week. Then they will start talking treatments. I think it actually hit her last night, she was very quiet and really didn't want to talk to anyone. She just got married Sept. 17th, her new husband is being very supportive. Thanks again for any information you guys may be able to give me.